We need new carers for the summer. We have direct payments and we don’t use agencies, so this means doing it all ourselves – advertising, interviewing and training.

We live in a university town. We are lucky therefore because we have a regular stream of lovely young people training to be nurses and teachers and only need carers during the holidays. They need work that fits in with studying and college vacations. That suits us.

Between myself and A we’ve been able to choose brilliant carers, the only downside is that they tend to leave after a year to go into full time work, leaving me writing references and advertising for the next lot.

Paperwork

Whenever I go to visit A at college I am struck by the scene: carers sitting around doing ‘paperwork’.  That’s the big difference between carers in an institution and carers at home. They also abide more strictly with health and safety regulations that insist upon carers wearing plastic gloves at all times, as well as student protection policies that prohibit hugs. I can see why these are more important in an institutional setting, but at the same time, that’s what makes institutions, ‘institutional’. Box ticking and paperwork start taking over; common sense and compassion start to take second place.

I sympathise.  One of our past carers; sympathetic, responsible and intelligent, also worked in a pub kitchen.  He confided that one of his jobs before finishing up in the early hours was to check the fridge temperatures. “No-one really checks them,” he admitted, “we just fill in the correct numbers in the book in case anyone comes to inspect.”  That says it all really. That’s what a box ticking mentality can do to you. It is I’m afraid, what’s happening to our society as a whole.  We all do it: teachers teach to exams but forget about inspiring students to learn, nurses can be so focussed on filling in charts that they forget the patient. Social workers notoriously spend much of their time filling in forms; benefits agencies read questions off a computer screen and spare no thought for the desperate human beings whose lives don’t fit into the script.

I remember being a teacher myself. I was supposed to be teaching one-to-one literacy but we spent the hour sorting out the contents of the pupil’s bag instead. I had decided it was the best use of the time and something that would most benefit further learning given the state of total disorganisation and chaos that the bag demonstrated. We took out stale crisps, crumbs, melted chocolate, old Christmas cards, scrunched up paper, and sorted out crumpled worksheets. I then ticked the boxes for learning targets: grammar, punctuation and sentence construction.

Checklists

Imagine if we had some box ticking at home. I could write lists for carers to check every day when they leave. Cleaned the loo? Done the washing up? Done physio? Put clothes in the laundry? Administered vitamin pills? Filed invoice? The danger might be that they would start seeing the things on the list as a priority and thinking that so long as these were done, the job was done. The sadness is that social services only calculate money for carers based on exactly this kind of checklist.

Alistair’s checklist would be somewhat different: Did you smile? Did you sing a song? Did you give a hug?  Did we have a laugh?

In the film Mary Poppins, Jane and Michael write their own advertisement for a nanny: “If you want this choice position, have a cheery disposition, rosy cheeks, and no warts! Play games: all sorts. You must be kind. You must be witty, very sweet and fairly pretty. Take us on outings, give us treats, sing songs, and bring sweets. Never be cross or cruel”

Young disabled adults are not children. However, it is a pity that carers lose sight of the caring aspect of caring.  The carers we want don’t have to be pretty (and warts aren’t contagious).  It is definitely important to have a sense of humour, an ability to take responsibility and impart warmth but above all, to display the qualities of compassion and common sense. 

Related posts:

1. Jane Muir May/June column
2. Jane Muir Mar/Apr Column
3. Maria Miller, July/August 2011 Column

Regular columnist Jane Muir invites her son Alistair to reflect on his last days at college and moving on.

At college they leave me to it. I have to cope.  I have to get the bus every morning and it’s so noisy. I don’t understand why they can’t turn the radio down a bit. It’s so annoying it makes me want to escape to somewhere quiet. I want to go to a quiet waterfall or another place.

At home I can have a lie in. I can have a rest at home, lie on my bed and watch TV or listen to the radio. We go to the pub or go out to walk the dog in the meadow in my Trax.

At college I don’t have a lie down at all; there’s no time. Sitting in my chair makes me feel angry and tired. There is a disco I really love – that means I can go mad on the dance floor. Swimming is good on Wednesdays and there’s karaoke on Friday afternoons but I don’t want to wait and wait and wait all the time for dinner and to get everyone on the bus.

At college I get the bus because I am offsite. There’s a girl I really like, but she’s got a boyfriend. Oh dear.  When I go to the Orpheus I hope I find a girlfriend maybe – or not.  I can do music and video recording and acting and dancing. 

Sometimes I like carers and they leave. It’s tricky. Boundaries means no touching bodies, so hugs are banned; I don’t know why. I think we’ve got to fly away from boundaries. I think in our next life we’ll have no boundaries, thank God.  I think it is very silly.

I like to Skype my mum every day and ask how everyone is. I see my cat and my dog and I can watch Mum making supper. She moves really slowly on the phone but when I am at home she’s always running!

In the holidays we go to London on the train together. I prefer the train to the car because it’s so much fun to see the countryside and the trains go by.  We can sit in a café at the station and get a drink and wait for the train or explore the station. A man gets a ramp and wheels me onto the train and the bus puts a ramp down. I like going round the museums in London and seeing pictures or going on the London Eye. I like looking at the boats going by on the Thames, it’s really amazing.

London makes me happy and excited. I like the little cafés and watch people going by. I would like to live in a square with a fountain. I dream that I am living in London in a quiet place. I can lie down on the grass and close my eyes for a bit and listen to the birds and the people’s voices.*

I hope I can go to London on the train when I am at the Orpheus next year because it is nearby. London is big and busy. I want to move away down south near the sea, near London. I always love London: there’s lot of things to do.

At college we only go into the town centre and we go shopping to buy shower gel. We went to a park and sat down and relaxed with an ice-cream.

When I am at college, Mum can go to work and have a lie down, clean my bedroom and take the dog for a walk and sit in my comfy chair and walk on the ceiling and miss me a lot!

I am really low at the college when my carers go home off-shift. I feel sad about ending college. I will miss everyone but I want to leave.

*If anyone has any ideas about how to provide a home in Central London with a view over the Thames and a square with a fountain nearby, please let me know.

If anyone ever needs the loo in London W1, I would highly recommend the disabled facilities in John Lewis, Selfridges and Fortnum and Mason – the latter in particular. The things you learn!
Jane

Related posts:

1. Jane Muir Mar/Apr Column
2. Stopping Caring
3. MARIA MILLER – Able Jan/Feb Column

Alistair came home from college for a weekend – within half an hour he had developed a fever and was ill for the whole of the rest of the week. I struggled with working in the day and caring for him evenings and nights, and of course, by the end of the week, both the carer who helped me out and I had also gone under. Two weeks later, we are all still alternately feverish and chesty. I feel guilty because A’s carer came into our house to work even when friends refused to cross the threshold – and she loses wages through not being able to do her other jobs, none of which pay her if she is ill. And now although neither of us has recovered, Alistair comes back for the holiday still hanging on to what my mother likes to reassuringly call ‘a nasty cough’.

Having a virus that won’t go makes you grumpy and over emotional even when you aren’t looking after someone else as well. Trying my best not to take time off work having already taken a couple of days off the week before, the smallest of tasks reduce me to hot tears of frustration. I have to fish Alistair’s application for an ‘Adult Learning Grant’ out of the recycling bin where I had thrown it in despair, and when for the second time in a week someone calls round to ‘inspect the hoists’– apparently one visit was the council and the other insurance – I tell him in no uncertain terms what to do with his health and safety check. Alistiar’s word predictor has decided that the word he will always need first and foremost is ‘th’bist’. I have been told this may be a virus too. Or perhaps a secret message from the beyond?

By the end of the day, I can’t remember if I cleaned my teeth or whether I just cleaned his. I break into a sweat trying to get his arm through a sleeve, and lose my temper when he sneezes food over me at the dinner table.

I worry because social services have arbitrarily reduced our direct payments for care for this year. They are still ‘negotiating’ about how much care they will give us for going to the Orpheus Centre after college.  They have, after thirty or so letters of support from friends, professionals and MPs, agreed to the place ‘in principle, for an initial year’. And ‘an initial year’ doesn’t exactly fill me with confidence when I try to make plans for the future.
People are so pleased for me when I say that I am back to work, and I get far more respect for tootling into school to teach literacy than I do when my (unpaid) work is cleaning a soiled sling or mending a broken footplate or getting the emergency GP to understand why we need paracetomol suppositories. However, the fact is that my son, after three years of residential college, enthusiastic young carers and therapy, swimming, and endless certificates in ‘life skills’, and independence practice, still just wants to be ‘at home’. He still can’t organise time on his own at weekends, and he doesn’t seem to make friends with other students, possibly due to his speech difficulties. People are very fond of saying to me ‘You have to put yourself first’ or ‘You have to let go!’, and caring for a family member is not seen as a ‘cool’ occupation, however often it is discussed on Radio 4.  But why should I abandon him?

I said to Alistair when he was miserable about returning to college ‘Just tell me one thing that is good about it.” I shouldn’t have asked. He looked at me and replied, “It’s better for you.” He didn’t mean to be mean – that is not in his nature – he was just stating the fact as he saw it. Until he is good and ready to let go, I’m not about to put myself first – and I need to find an in-between solution for the future.

Related posts:

1. Stopping Caring
2. Stopping Caring
3. Stopping Caring

Jane Muir shares her ongoing experiences of life with – and without – her disabled son.

Labels limit the way society sees and treats you. I feel that I’m betraying my son every time I let professionals tick ‘mild or moderate learning disability,’ just because he has moments in which he exhibits a learning disability of some kind. But there are other times when the label of ‘learning disability’ is as relevant to my son as describing virtuoso percussionist Dame Evelyn Glennie as ‘deaf’ or Paralympian Ade Adeptitan as just ‘a wheelchair user’. Yes, they are those things, but they’re also so much more.

Narrow, prescribed judgements cloud our appreciation of others, and box-ticking reduces us to a list of ‘one to five’ on a narrow scale at a time when we’re supposed to be celebrating diversity.

Like other parents with disabled children, I have had to deal with countless assessment forms for medical, educational and care needs. Despite my best efforts, the process has sometimes adversely affected my own personal relationship with him.

This week, Alistair’s social worker in the physical disabilities team wanted me to clarify the extent of his learning disability in order to apply for a grant. I had ticked ‘C’ – ‘Can communicate but with difficulty due to physical limitations’ – but she wanted me to tick ‘D’ – ‘Can only communicate basic nutritional and toileting needs’.

She was on our side; she wants to get him the grant, and the more needy and vulnerable he is portrayed the better. It was in his interests for me to agree, yet I left her office depressed and, more importantly, worrying about whether my perception of my son was realistic. When I came home I felt confused and cross with myself and him. Having had to change my mindset for two hours, and make out everything as different from how I perceived it, I had already started to come to believe it – and to question my own perceptions. If you say a thing often enough, it can seem to be true.

Research since the 1980s into the way our minds work has pointed to there being different types of intelligence; I reckon my son has at least a few of them, including emotional, musical and linguistic. He also has personality traits of curiosity, perseverance, honesty empathy, sensitivity. He just doesn’t fit the boxes – most of the boxes are as relevant to him as a ‘contains no nuts’ label on a tin of tomatoes.

My lodger is terribly nice but has issues with sorting the household rubbish. He is a biochemist, which is part of the problem. In exasperation, I say: “Look, ask yourself two questions. One, is it a bottle? Two, is it plastic?”

“Yes, but-” he says, and I sense a thesis coming.

“Stop thinking about it,” I suggest, “and just do it. Blue box, green box, compost, bin.

Easy.”

If sorting rubbish into categories can be complex, what does that say about people’s minds? Human beings are so complicated, and we know so little about the way even the so called ‘normal’ mind works, let alone someone who has been starved of oxygen at birth.

Some parents prefer and insist upon having labels for their children because it opens doors to obtaining the resources and help they need, but it comes with an emotional price.

When he was about 10, Alistair wrote:

I know CP can smash the tail of the tiger. Everything smashes in little bits. I smash Mum sometimes. I get ready to knock the phone the floor. Mum shouts at CP but she says it’s not my fault. When something like a hot drink on the table, It is easy to knock it off. My clothes can be covered all over hot. Better not put any drinks near to me! At school, I wave my hands and knock the children. I say sorry. I know sorry is so hard in the world and it makes me sweaty I feel so sad.

Now shall we reduce that written insight down to moderate or severe communication difficulties?

If you could get an Oxbridge degree in contribution towards people’s understanding of ‘what it is to be human’, I think Alistair should be given a double first.

Related posts:

1. Stopping Caring
2. Stopping Caring
3. Stopping Caring

Jane Muir shares her ongoing experiences of life with – and without – her disabled son.

Labels limit the way society sees and treats you. I feel that I’m betraying my son every time I let professionals tick ‘mild or moderate learning disability,’ just because he has moments in which he exhibits a learning disability of some kind. But there are other times when the label of ‘learning disability’ is as relevant to my son as describing virtuoso percussionist Dame Evelyn Glennie as ‘deaf’ or Paralympian Ade Adeptitan as just ‘a wheelchair user’. Yes, they are those things, but they’re also so much more.

Narrow, prescribed judgements cloud our appreciation of others, and box-ticking reduces us to a list of ‘one to five’ on a narrow scale at a time when we’re supposed to be celebrating diversity.

Like other parents with disabled children, I have had to deal with countless assessment forms for medical, educational and care needs. Despite my best efforts, the process has sometimes adversely affected my own personal relationship with him.

This week, Alistair’s social worker in the physical disabilities team wanted me to clarify the extent of his learning disability in order to apply for a grant. I had ticked ‘C’ – ‘Can communicate but with difficulty due to physical limitations’ – but she wanted me to tick ‘D’ – ‘Can only communicate basic nutritional and toileting needs’.

She was on our side; she wants to get him the grant, and the more needy and vulnerable he is portrayed the better. It was in his interests for me to agree, yet I left her office depressed and, more importantly, worrying about whether my perception of my son was realistic. When I came home I felt confused and cross with myself and him. Having had to change my mindset for two hours, and make out everything as different from how I perceived it, I had already started to come to believe it – and to question my own perceptions. If you say a thing often enough, it can seem to be true.

Research since the 1980s into the way our minds work has pointed to there being different types of intelligence; I reckon my son has at least a few of them, including emotional, musical and linguistic. He also has personality traits of curiosity, perseverance, honesty empathy, sensitivity. He just doesn’t fit the boxes – most of the boxes are as relevant to him as a ‘contains no nuts’ label on a tin of tomatoes.

My lodger is terribly nice but has issues with sorting the household rubbish. He is a biochemist, which is part of the problem. In exasperation, I say: “Look, ask yourself two questions. One, is it a bottle? Two, is it plastic?”

“Yes, but-” he says, and I sense a thesis coming.

“Stop thinking about it,” I suggest, “and just do it. Blue box, green box, compost, bin.

Easy.”

If sorting rubbish into categories can be complex, what does that say about people’s minds? Human beings are so complicated, and we know so little about the way even the so called ‘normal’ mind works, let alone someone who has been starved of oxygen at birth.

Some parents prefer and insist upon having labels for their children because it opens doors to obtaining the resources and help they need, but it comes with an emotional price.

When he was about 10, Alistair wrote:

I know CP can smash the tail of the tiger. Everything smashes in little bits. I smash Mum sometimes. I get ready to knock the phone the floor. Mum shouts at CP but she says it’s not my fault. When something like a hot drink on the table, It is easy to knock it off. My clothes can be covered all over hot. Better not put any drinks near to me! At school, I wave my hands and knock the children. I say sorry. I know sorry is so hard in the world and it makes me sweaty I feel so sad.

Now shall we reduce that written insight down to moderate or severe communication difficulties?

If you could get an Oxbridge degree in contribution towards people’s understanding of ‘what it is to be human’, I think Alistair should be given a double first.

Related posts:

1. Stopping Caring
2. Stopping Caring
3. Stopping Caring

Alistair has been back from college for the summer and, reverting to my role as mother/carer, one of the things I have to get used to all over again is being out and about with him and losing the treasured ‘anonymity’ I usually feel. In his wheelchair, Alistair is a target to all kinds of odd reactions from strangers.

On the first week I took him swimming. On the way home, I left him in the back of the van, parked in a disabled parking space, listening to the radio while I popped into the supermarket to get a few things we needed for lunch. Climbing back in again, I was aware that a lady with a walking frame was staring – glaring – very hard at me over her shoulder as she made her way up the street. The car window was open and, full of the joys of summer, I gave her a smile as we pulled out. She scowled back, spitting out the words she’d been longing to say: “You’re not even disabled!”

I did not stop to grace her with a reply, but that is the second time that has happened to us – both times by disabled people who should know better.

Then I took Alistair to see the optician about his eye infection, only for her to ask kindly: “Have you cared for him since he was a baby?” Off to the market to get fruit and veg; while Alistair scans a jewellery stall to find a necklace, the market holder suggests sweetly: “I expect he’s attracted to the colours”. On  top of a cliff a walker asks: “Can he talk?”

All well meant. All so irritating.

I found myself warning our new carer, a 21 year old student who was accompanying Alistair to the theatre, that if anyone approaches her, be wary, as they might be a bit funny or patronising. “Just fend them off, walk away.” For we’ve had a couple of carers in the past left tearful after such well-meaning but unwanted encounters with over curious/enthusiastic members of the public. One was trapped on a bus with such a person, and ended up having to get off and wait for the next bus! I know lots of people get this; how do they deal with it?

On the bright side, we went camping in Dorset for a night. Camping has changed! My friend’s tent had a beautiful light living room, two double bedrooms and a hallway – you couldn’t touch the ceiling, and so there was no crawling into bed! She even had an oriental rug and a table with a vase of flowers.

The campsite, Tom’s Field, was small, green, clean, friendly and you could buy cups of coffee and tea in the shop, charge up your mobile or hire a barbeque. And there was a separate disabled shower/loo too – not a very big one, but the people running the site were very amenable to considering how they might make it more accessible for someone in a powerchair. They were so positive and welcoming that we decided that, if we were to get hold of our own portable battery hoist, camping might be a real possibility for the future.

So far I have had encouraging noises from occupational therapists, once I got over the initial phone questionnaire to transcend from children’s to adult services. Having told them that, yes, we have had services for 18 years already and, yes, my son has CP and yes, he gets the higher rate of DLA etc. etc. the lady started asking me in a very deadpan and humourless way about myself.

My date of birth? What kind of house did we live in? Was Alistair aware I was making this phone call for him? Do we have smoke alarms fitted? Do we have any pets?

At this point, I am thinking we might be on Candid Camera.

“Pets?” I exclaimed. “Why do you need to ask that?”

“It’s the next question”, she said in a bored voice.

“A dog and a cat,” I replied through gritted teeth.

“Is the dog dangerous?” she asked.

“No,” I replied, feeling rather dangerous myself. (She is a small, affectionate Cairn and the notice we have to deter burglars saying ‘Beware of the Dog’ makes people laugh.)

“And are there any other safety issues about sending someone to your house?”

I thought about it. All makes and sizes of therapists and carers and hoist inspectors have been visiting our house regularly for 18 years; the downside to having a disability is constant invasions of one’s privacy. I was tempted  to tell her my new lodger is a werewolf.

But I just meekly said no, I can’t think of any. After all, we need the hoist!

Related posts:

1. Stopping Caring
2. Stopping Caring
3. Stopping Caring

I  may be a literacy teacher with a degree in modern languages, but the letters I receive from the benefits agencies leave me struggling. Possibly they constitute some kind of arcane computerised poetry. Although there are recognisable sentences with full stops and capital letters, and these sentences mimic the English language, the meaning remains elusive, with juxtaposed contradictions and staccato and repetitive choruses. The last correspondence from them to me was 25 pages long. Oh bliss! One line even states quite clearly (I think) that my son is a ‘non-dependant’….

The booklets I am sent at the beginning of each College holiday require breakdowns and proofs of my entire financial existence, meagre as it is. One would think that me and the benefits were ‘a pair of star-crossed lovers’ bogged down in a mire of misunderstanding, deep rooted suspicion and mistrust. At the end of it I am none the wiser, and possibly neither are they – the problem seems to be my ‘fluctuating earnings’ – except that I think I get less money overall if I work, and certainly more hassle. I was wondering if I should give work a miss next year – but then I would not only be doing myself out of a meaningful aspect of my life, but also denying someone else a job at the benefits office – these forms and letters must surely be taking up a good few hours of someone’s time and I wouldn’t like to think that, right in the middle of a recession, I was creating job loss for two!

Of course it would be simpler if I could just take full time work and sign off, but I can’t. I still need to be a full time carer for an average of 20 weeks of the year, and I do need a bit of free time – caring 24/7 has left me older, more easily tired and  with less energy. Last term, there was an overlap week where I found myself teaching just five hours during a week when Alistair was home with the flu. This meant that I lost my Carers Allowance for that week – even though I was still caring intensively for the other 163 hours! We do have direct payments to buy in some care, which is great, but employing and organising carers is still time consuming and not always straightforward.

On the other hand, I am getting used to having two alternating lives. There’s the one that is just mine, where I can wear frocks if I so choose, and miss meals, and be relentlessly selfish. In that life, I can go to late night films, or whisk down to London to see a friend at a moment’s notice or cycle up to the woods to listen to the dawn chorus on a whim – and not worry about having a hangover! In the other life, I am in practical hardwearing clothes – do anyone else’s jeans get holes from kneeling on jagged non slip surfaces on van floors and bathrooms? I have to get up and operate hoists  in the night, which leaves me demolished the next day, and maintain endless pieces of equipment and be terribly, terribly organised – making daily phone calls to get stuff repaired, arrange appointments  and try to work out how to get grants/funding for the future, as well as organising the entire daily life of a 19 year-old boy who can  do very little independently.

I am grateful that we live in a welfare state with a National Health Service; I constantly remind myself how lucky we are, because elsewhere as a single parent with a severely disabled child we would have been up the proverbial creek without a paddle.  However, the only literary text that comes close to describing what we go through in administrative red tape is Kafka’s The Trial. I wonder whether the new Government will make this situation better or worse for carers?

Meanwhile, I am told that due to cuts, Alistair is unlikely to get a grant from the education authority to continue further education in the performing arts for young people with disabilities at the Orpheus Centre. So he is supposed to sit at home and watch telly all day? Or what?

Maybe the government will try to get him to work – after all, they have provided enough courses in ‘Skills for Living and Working’ over the years. Here is his ‘Wanted’ ad:

Sociable, cooperative, good looking young man, keen interest in music and the arts, easily bored, would like to travel, needs job. No GCSE’s, limited communication or hand function, wheelchair user, 24 hour 1:1 intimate help essential. Computer literate: typing approximately 1 wpm. Any salary accepted as no concept of money.

Maybe he could go for chairman at Goldman Sachs, but what would that do to his benefits?

janemuir@tiscali.co.uk

Related posts:

1. Stopping Caring
2. Stopping Caring
3. Stopping Caring

2010 started out with the week’s dance course we had fundraised for Alistair to go to at the Orpheus Centre in Surrey, which runs short and long courses in the performing arts for young disabled people. This turned out to be fantastic. Alistair, who has always been interested in the arts and music, had never really felt confident about performing in front of an audience, but the ‘Sensations’ dance workshop culminated in a show with a thirty strong cast in front of family and friends, with a stage, lighting, sound effects, and an interactive background film screen. To my immense relief, Alistair enjoyed every minute, as you can read from his own report below…

Returning to his residential college was another matter, and the snow meant a second week off, mainly spent in bed with a cold. Luckily, his holiday morning carer, Agnes, was able to come to the rescue, and we staggered on, somehow, until the weather and the cold cleared up. We even managed to get something called a Carer’s Replacement Grant – don’t know what that means, but we were pleased to have it!

The big question now, of course, is whether wonderful places like the Orpheus Centre will be affected by coming spending cuts. We can only hope that the powers that be understand how very valuable creative education is for young people, and that channelling learning funding only towards employability excludes many young, disabled adults who benefit as much as anyone from being active, creative and engaged.

Here is what Alistair wrote, tidied up. Able magazine readers who are interested in finding out more about the Orpheus Centre, founded by the musician Richard Stilgoe, should call 01883 744664, email enquiries@orpheus.org.uk This e-mail address is being protected from spambots. You need JavaScript enabled to view it or visit www.orpheus.org.uk.

Read on!

“We went to the Orpheus Centre for a dance course. We found our bedroom first. It was very big with a big window and a bathroom. On the first Sunday evening we sat on the sofa to watch TV. Mum unpacked our things.

“We saw the dining room. We had a lovely meal, and after dinner we sat on the sofa in the living room and we met the other people who were doing the course. I went everywhere on my own. I like the way the building was made. That man Richard Stilgoe did so well, to make it easy for people to drive their powerchairs everywhere.

“Mum stayed in the bedroom and she said ‘I am here when you want!’ I said: ‘Ok, don’t go to sleep or I will shout wake up!’

“There was a beautiful girl called Lizzie who danced with me. I really liked her. She kept saying a good word that goes like ‘A-righ?’

“I could open the bedroom door with a cool magic key. I just passed the key and it opened!

“Every morning, I went to the canteen on my own to have breakfast. Then I went to my dance course on my own in the barn. The barn felt like a dark tunnel. I felt there should be trains coming in on a platform.

“The dance was about mobile phones. They did a weird phone dance that I know really well now. The way to remember it was to think: ‘waiting and cleaning windows phone rings and private talking’. The music was really good and quiet.

“Dancing is a big thing and it was a proper dance group because everyone came to watch. People moved their bodies and their hands to the music. I drove my powerchair under people and around and around and it was really cool. It was a bit weird because I have never done that before and it was difficult to do some things with my left hand. We even went out in the snow for some dances. It was very, very cold. The dance teacher had a smiley face and she did so well. Incredible that she taught everyone the dance. And we all sang ‘Orpheus Centre rock and roll!’

“I would like to do another course for three years after I finish college if I can have a grant. Every morning I woke up and watched the snow falling and the trees. By the end I was tearful, but I will keep in touch with everyone on facebook.”

Related posts:

1. Stopping Caring

Well, my son has gone back to residential college. While part of him wanted to stay at home, he was also ‘excited’ and, while part of me would miss him, I was jubilant at the freedom and the opportunity to be myself again – just for a bit.

It feels so very different when I am working, in a way that I am not sure that anyone who has not been a carer can comprehend. The elation doesn’t make sense – it’s irrational and annoying – but dressed in my working clothes, walking into a classroom as a supply teacher, I feel as if I ‘count’ again. I am a real person, responsible, and the world treats me differently.

Why should this be? For 18 years, I was working very hard, doing a responsible, demanding, exhausting, stressful job as full time carer. I gave up my career, the prospect of a mortgage and holidays abroad. I learned every trick in the book on how to survive on very little. I knew it was the right thing to do, so why didn’t I feel like I counted?

Supply teaching can be stressful, but you do get evenings and weekends off, you get to chat to people during breaks and you don’t even have to go to work if you are ill – as a carer there is no such luxury! There is something about belonging, status, being paid, and being seen to be ‘doing the right thing’. No-one sees you hoisting in your dressing gown at 2am. No-one even knows you had to.

It is uncomfortable being on benefits. Phone calls to the DSS are often humiliating; endless forms to fill in, declarations to sign and requests to see your bank statements  make you feel like a scrounger. It makes no difference if you are on benefits as a fulltime carer or because you are unable to work due to physical/mental disability or any other bona fida reason.

Even Carers UK are uncertain about how on earth my benefits are going to work out if I am working some days and not others, during term time but not holidays, and at many different places for various different employers. Those DSS office clerks will doubtless have a field day when I start gleefully reporting my ‘changes in circumstances’…

Did I really need to be on welfare all those years? I can’t see how I could have done things differently. Having a flexible, part-time term time job – in itself, hard to come by – might have been life-enhancing, but that would have meant earning just enough to lose my Carers Allowance – so, I would have been working virtually for nothing but still caring just as much. Given that the DSS treated me suspiciously whenever I tried to declare any extra earnings from freelance writing, I soon worked out it was better just to do voluntary work. Even then I got into trouble – was I really not being paid or just pretending? And, for some reason, being a volunteer in an office full of paid employees just didn’t give you the same status. My black suit felt bogus.

Why should these things matter? They just do. Being a carer doesn’t cut it; however good you are at it, it has zilch kudos. The welfare system is partly to blame – appreciative as I am that we have one at all!

I am still a carer, albeit part-time. Sorting out Alistair’s own benefits, bank statements, grants, his long college holidays, his worries, any illnesses, his setbacks and challenges, his future – all take effort, both physical and emotional. I still sometimes wake up in the early hours thinking he has called me, and lie worrying about his wellbeing. I tell myself he is 18 and has a swathe of people looking after his best interests. But, unlike other 18 year olds, he can’t communicate clearly, can’t plan for himself, finds it hard to complain or get things done, cannot sign his own bank account or use any technology without help, and his future is very much in the balance.

Yesterday I went into a special unit for boys with challenging behaviour. One of them watched me sideways for some time before commenting: “Sir, it’s like having your mother come into school! It’s embarrassing.”

When I last taught I was in my 20s and boys would flirt. Now, I know every intimate detail there is to know about teenage boys and their needs. I can hardly be offended by being perceived as ‘mother’!

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But, thanks to the ‘suspicion’ of swine flu, no carers were allowed near the house for five days, and his first respite weekend was cancelled. So, there I was – flung back into full time, single-handed caring again. By time Alistair had got better and re-energized, I had almost succumbed to fatigue and despair.
However, the original care plan has now swung back into action. Our wonderful Slovakian carer, Agnes (who lives handily up the road) comes in to get Alistair up, dressed, breakfasted and exercised nearly every morning – which takes about three hours. Then either Katy or Jacques take him on an outing, once or twice each a week. Alistair’s main problem is boredom – he needs to be kept occupied, which takes a lot of one-to-one effort; he doesn’t want to surf the internet, listen to music and watch TV interminably.  So far he has, on the rare days when it has not rained, been charging across the countryside in his all terrain power chair with a picnic; he has been to a concert, the cinema, a museum, an art gallery and the pub. Katy, who is an art student, intends to spend two days making a film with him, while Jacques is teaching him a bit of French.

Both of them, like Agnes, are beginning to decode Alistair’s dysarthric speech. So far so good.
Direct payments meant we could advertise for – and choose – carers independently. It was tricky finding the right people – young, intelligent, conscientious, sensible and above all, fun – but, in the end, we did.
I have been able to spend time applying for work for the autumn, as well as seeing to the endless ‘appointments’ – physio, OT, wheelchair service, and so on. I have also been able to spend ‘quality time’ with Alistair – minimizing the tiring, physically draining parts of the care and therefore able to just relax with him and take him out to things that interest both of us. Hurray!
The only downside, apart from the flu, has been the impossibility of going away. A friend had offered us her cottage, but I suddenly realised, during the flu week, that I just couldn’t get by without the hoists and ramps and equipment that we have at home.   Alistair is suddenly too heavy to lift, even with a willing friend – I have found it hard to acknowledge this. In future, holidays will have to be in accessible holiday homes with roll-in showers, ramps and hoists. I know that these are expensive – usually larger than we need and not necessarily in the wild parts of the country that we love.
However, to end on a hopeful note, I just had an email from the matchinghouses.com website, which matches up disabled people all over the world. Someone has a fully accessible flat in Islington which they would like to swap sometime for our ‘semi’ in Oxford. Alistair and I both love London but, due to his needs, have not been able to stay down there. So, let’s hope this might be just the thing for half term!
And is Alistair looking forward to his second year at college? “Kind of,” he says. That’s good enough for me.

Related posts:

1. Stopping Caring

janemuir@tiscali.co.uk

Related posts:

1. Stopping Caring

Related posts:

1. Stopping Caring

My son is 17, and has just left home to go to one of the country’s very few residential colleges for young physically disabled people. It was a move that both of us had yearned for – and yet dreaded at the same time.

The year leading up to his departure was fraught with emotion. Then the time came; one day I was doing everything for two – teeth brushing, dressing, showering, toileting – and the next I had hours, days, weeks, just to myself.  The change seemed overwhelming.

I’d decided it was best to fetch my son home the first few weekends – to iron out any problems, to ease him in gently and familiarise myself a little with the college ambience. Also, I knew he wouldn’t be able to communicate with anyone very easily at the beginning, so might need a good long chat. Indeed, during the first week he phoned me and deciphering his unclear speech between the sobs needed the most extraordinary concentration, especially as I was standing in the middle of Boots at the time! By the end of the phone call, though, he had cheered up.

Yet when I collected him that first Friday, he was bursting with news and a newfound confidence. After the second week, he complained he’d miss out on the evening’s fish and chips and a disco. On the third Friday, delayed by a steam roller, I arrived late to find he’d gone in to have supper without me. “I went to the bar and ordered a drink on my own with no help!” he told me, bursting with pride.

Suddenly he had separated, finding a social life I couldn’t provide for him at home. Not only that, but he’s learning – his timetable includes art, swimming, music and money management – and he has teams of speech and physiotherapists to look after his every need.  Alistair phoned me just once last week, to ask how I was and to reassure me. “It’s alright, Mum, I don’t need you,” he said. I laughed, and felt a little wrench inside.

It’s weird going to sleep without the sound of his breathing down the monitor at my bedside. It is so strange and exiting to be able to go out any time of day or night without the difficulties of having to arrange carers. I can’t say that the anxiety has entirely gone, but some of it now is about myself. What do I do now?

If you don’t count holidays I have possibly up to three years of relative freedom ahead of me. Friends in far flung places tempt me with the idea of visiting them. There’s the question of money, of course. I applied for a “Return to Teaching” course, but it has been deferred to the New Year and, anyway, I’m wondering if that’s what I still want to do, having now seen the underside of an education system that often fails kids with special needs.

I also wonder how trapped I am by the benefit system. College holidays will mean a return to full time unpaid caring, so I can only really consider part-time freelance work. Any money I earn at the moment will come straight off my benefits, so it won’t really feel like earning. Only if I earned a serious amount  would I be able to renounce benefits altogether and even then I would have to re-apply every time the holidays come round. I have spoken to a helpful man at Carers UK only to feel completely daunted by the complexities of the system.

However, I am optimistic. The stress and relentless physical exertion of years of caring seems to have magically lifted, and for the time being at least, I float in a cloud of newfound energy and exhilaration.

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