While you're dealing with my kangaroo, put my rhino in a cage too

As I said last month, I tend to jump the the defence of clinicians even when it's not in the least my role to do so. As an administrator within the NHS I know the frustrations involved in this and tend to try to understand administrative mistakes too.

Sometimes though, I just get veeeeeeeerrrrrrrrrrrrrrrrrrrrrrrrrrrryyyyyyyyyyyyyyyyyyyyyyyyyyy angry at the incompetencies of the services, particularly the mental health services, and want to charge at them and tell them what utter numpties they are.

That of course is no more helpful than covering up for them so it's probably just as well that I found out about their latest mistake in communication (which I suppose may have been caused by the post office anyway) at 6:30 tonight when they'll all have gone home. Gives me time to sleep on it, formulate a plan and then CHARGE

cheating!

Last night I went to a quiz night organised by Kathryn. It was a lovely night and I really enjoyed it, however being parted from my internet connection, even via my phone, for three hours was hard.

The reason I wasn't allowed to use the internet was obvious - to do so might have involved cheating.

As the great Tom Lehrer noted, there's a fine line between cheating and research. 

I'm definitely crossing it here. Instead of my own blog, I give you, and more importantly ME, someone else's.

Here is ONE MORE MUM'S blog post about her dear son J. In a week in which I had begun to doubt whether pursuing an assessment for my daughter for Autism was a good idea, I am much encouraged by this. I think it's probably a good idea for everyone, whether they have what are euphemistically called "special needs" or not, to be encouraged to do what they are good at rather than made to do what they find impossible.

Tie Me Kangaroo Down Sport, Tie Me Kangaroo Down

I've been trying to write this since November - it's still not "right" but if I don't press "publish" now I never will, and having got used to blogging again during Lent it would be a shame to give it up for Easter.


I adopted the boxing kangaroo as my picture after the EDIC 2010 conference. I was so angry that the plausible theories of "The Recovery Model" actually boil down to leaving people to struggle without support, that professionals thought it OK to allow patients with a BMI of 11 to "choose to live with their illness" and that parents were still being encouraged to "let them hit rock bottom", that I decided the only reasonable stance a parent could take was to nurture his or her child safe away from this madness and hit out at anyone who suggested otherwise.

Of course it was a bit of black humour. I know that kangaroo parenting is preached against in the New Maudsley Method and thought I understood what it was and why I shouldn't do it.

I didn't really, and in an attempt not to be a kangaroo I think I've sometimes been an ostrich and ignored genuine opportunities to help and sometimes been a rhino and tried to head-butt others over obstacles when t would have been better to carry them.

It was only at the FEAST conference in Nottingham that I think I REALLY got the drawbacks of being a kangaroo and realised that I am still very much one. By advising carers not to be kangaroos the professionals aren't telling us not to care, to cook, to plan, to support the person. They're telling us not to cover up, make excuses, bluster, support the illness.

My ahah moment about this came straight after the showing of a brilliant film developed by Professor Treasure's team and funded by the Succeed Organisation. It showed a family acting out the kind of rhino meets kangaroo meets  jelly fish in the zoo from hell that can become the new normal with a misunderstood life-threatening mental illness in the house, and then the alternative when dad took the St Bernard stance. Doing so did NOT involve covering up the distress caused by the illness, or explaining to the angry brother that "she can't help it". It involved acknowledging his distress, rolling with resistance, and moving on.

Straight after the film was shown I logged on to Around the Dinner Table and found someone I know quoted (presumably without his express consent) as saying something controversial. Immediately I knew that the Dolphin or St Bernard approach would be to leave it up there and let people discuss it - these weren't the words of a vulnerable patient, they were the words of a robust clinician. They weren't being hammered down out of ignorance by a group of hostile harpies, they were being questioned by a polite but extremely well informed group of people with a passion for the subject. What I did was to try furiously to edit it to take out any identifying information. As I was doing this from a conference room via my phone all it did was mess up the format of the post and make it obvious that it had been edited by a madwoman. Just as in the first film clip, my attempts at saving the person, while well meaning, only ended up saving the misguided remarks.

I tend to do this with clinicians. I work with quite a few of them. I think I understand where they are coming from. I try to support them because I know that in general they are doing valuable work with the best of intentions. All too often though, in attempting to support the person, the organisation, the good parts of the work, I end up leaping to cover up the mistakes, to make excuses for the gaping holes in the system, to delete the unfortunate wording which "he can't really have meant, can he?????"

THIS IS THE KANGAROO STYLE THAT I AM ADVISED TO AVOID

It's difficult, especially when the whole system in which the clinicians I respect and want to do well are working IS under real attack. Try running the mouse gently from side to side over this "helpful" diagram and you'll get some idea as to what it's like within the NHS at the moment. But the dad in the film did it, and with a lot of help I can too.

Tell me a story

Here we are at the end of Lent.

It certainly doesn't seem late enough in the year to be Easter, but that's partly because it is rather early and partly because the weather's colder than it was in January. I've been able to get into the garden today but only because it's been dry and, as 7 year old A says, if you work hard you'll get warm.

The LLLL task is to share the Easter story, and the suggested method is by giving someone an Easter card.

I HAVE posted Easter cards to a few people. I've received two lovely ones in return. However I'm not sure that, lovely though they all are, the cards really do much to tell the Easter story. After all, the real cross didn't have flowers round it and I'm not sure there are any bunnies in Jerusalem.

So here's a real Easter Message, courtesy of Kathryn.

And here are some cute little bunnies just because

A regular churchgoer

One Sunday morning I got caught. My husband set out for his church wishing me well in attending mine. It started to snow so he turned back and found me, not singing Anglican hymns in the pews, but enjoying an internet debate in my pyjamas. He wasn't best pleased and accused me of not going to church any more.

I DO go to church. I sometimes go on a Sunday if I can get dressed on time and there isn't some frightfully important thing to do on line. I'd rather stay in my PJs but although our congregation were very accepting of 4 year old A's decision to wear her penguin PJs to church every Sunday and hardly batted an eye-lid when her older sister wore a Minnie-Mouse onesie to Midnight Mass I think they might draw the line at my Peacocks fleecy jammies. When I do drag my clothes on and go I usually enjoy the service and really appreciate the music but my concentration span ain't what it used to be (probably all that internet time) and I don't always manage to concentrate on ALL of the service.

Thursdays are different. Thursdays are a Holy Day of Obligation. Maundy Thursday is the Holiest of days and particularly significant and wonderful for always being a Thursday.

Yesterday was special even as Maundy Thursdays go. It started with the customary foot washing. As usual most of the toddlers while fascinated by the water were reluctant to take their own shoes off. Rather specially though one two year old did it, and washed my feet and tried to encourage his twin to join in. The toddlers then baked bread to take home and break with their families.

After lunch with a friend I collected the god-children and went to the Catholic church hall for the local passion play. I'll admit, I expected it to be pretty dire. A, who is now all of 7, expected it to be a pantomime with a Dame and dancing and lots of jokes. We were both wrong. It was serious. I was glad that A has a wobbly tooth to keep her occupied in the quietest bits and very proud of the lot of them for being so good through what was a long, serious and very moving play. It DID contain the usual suspects from the local am-dram set playing the usual parts but it also featured some of the god-children's young friends including a girl with learning disabilities who performed her lines quite magnificently, a youngster who was too unwell to attend school at 11 but featured as the first convert at 13 and a Christ figure who was "chunky", Welsh and absolutely excellent. It managed, for me at least, to pull off the almost impossible - to retell the same old stories, including the parable of the Good Samaritan adapted for modern times, which is usually enough to send any churchgoer to sleep, movingly and memorably.

After the play we repaired home and shared a non-Passover meal. It WASN'T a weak and mocking attempt at being Jewish. It was a fun and Holy and very often irreverent meal with friends complete with prayer and wine and, when the children were hopefully not listening, quite a bit of Tom Lehrer 

The other special thing about Maundy Thursday is that, unlike other Thursdays, it isn't followed by a day at work, it's followed by Good Friday.

My Love Life Live Lent task today is to think about the Good Friday story and I'm going to do that as part of the Church on our village's walk of witness, but first I had better get off t'Internet and change out of my PJs if only because it's going to be a very cold one.

I give up...

Yesterday's task was to "be more imaginative, find out what someone has given up for Lent and then buy it for them for Easter"

I really can't see what's immaginative about that. Or practical.

One of my bosses gave up meat for Holy Week, but I'm sure she wouldn't thank me for buying her a ham sandwich for Easter. My husband has given up meat and milk and I WILL buy him some of both for his Easter, but since that isn't until May I have plenty of time to find a bargain Easter egg or a good value piece of beef. I don't know what anyone else gave up. I suppose I could try to find out but that wouldn't be imaginative it would be intrusive and unwelcome.

So all I did yesterday was to give anyone who might be reading this blog the gift of a day off - consider yourselves blessed!

Today's talk is easier - to buy some flowers for someone. So far the morning is lovely and the sun is shining, so I will be able to pick or buy some flowers for my neighbour, and I will get some for me too.

Repeat after me....

today I'm supposed to learn something off by heart.

Love Life Live Lent doesn't actually specify what but I suspect they don't mean the NICE guidelines on eating disorders so that I can recite them backwards as a party trick so I think I'm going to try to learn the words of this so that I can sing it even when I've forgotten my reading glasses and lost the hymn sheet as I usually do in Church.

encouragement

I'm supposed to encourage others today, and I don't suppose encouraging my husband to put the bin out or my daughter to clean the bathroom count. My online activism might be thought more "rabble rousing" than encouragement, if only I could work out what exactly we should all be being encouraged to do.

A dictionary definition of encourage is to

1. Give support, confidence, or hope to (someone): "encouraging results"; "I feel encouraged".
2. Give support and advice to (someone) to do or continue something: "pupils are encouraged to be creative"

Looking back over my day, while I may have tried to give this in more spiritual or emotional ways I think the most encouraging thing I've probably done today is to organise the payroll early so that people get paid before Easter. It would certainly be most DIScouraging for us all if we weren't paid, so that will have to do. 

Simple?

Today I am supposed to live more simply by finding a thing I don't use and giving it away.

I tried to give away a slightly soiled senior professional but no one wanted him, and to be fair, he's really rather needed where he is. I don't NEED the cats, but I like them, despite one of them waking me up in the night by throwing up on the carpet.

So today has been a bit of a failure on the LLLL front really although I do learn via Twitter that the Archbishop of Canterbury went shoe shopping, so presumably gained some material goods rather than giving any away, today so I'm in good company.

O Lord Hear My Prayer

today I have to list 5 people I met today and pray for them. I will, but I'll pray for those who love them and those who are like them too

Lord send your blessings on R the tramp who sleeps under the carport at work. You really would have to be on a lot of heroin to be able to stand sleeping outside on a night like tonight and he probably is but he must have had a mother once, maybe brothers and sisters, he has "friends" who inject drugs with him and landowners who try to discourage him from sleeping and messing in their carport but put up with him anyway. Lord Hear My Prayer

Lord send your blessings on P, and all my other colleagues at work. It's been a hard few weeks. We're struggling to provide a good service to sick and vulnerable people, and demanding people, and people who don't appreciate how difficult it is to work within the constraints of budgets and regulations, and people who do, and people who care about the service and want to protect it and people who don't. We are doing our best and our best isn't always good enough. Lord Hear My Prayer

Lord send your blessings on N, and all my other friends in cyber-land who are frightened or angry or confused or depressed. Bless them, their loved ones who are cared for by them or who in turn care for them. Bless the people they have been hurt by, the people they despise, the people they rely on, the people they admire. Lord Hear My Prayer

Lord send your blessings on K, my priest. When I go to the Orthodox Church I am unable to fill in the prayer sheets as one is supposed to complete them in a particular order with one's priest at the top and the poor dears can't get used to the idea of a female name at the beginning of the list. Send your blessings on them as well, and the Pope, and the ABofC and all in leadership roles in the Church and the world. Lord Hear My Prayer

Lord send your blessings on Z and all of the rest of my family. Z has a scary medical appointment at a (relatively) ungodly hour tomorrow, her father has a lot of church to go to and singing to do in the next couple of weeks, her sister is a long way away from us all, her niece is learning to eat rusks in a foreign land and her mother could probably do with some prayers as well.

Smile!

I am required to smile today.

Actually I don't find it very difficult - I tend to grin inanely when confused, grittedly when upset and ferociously when angry, but I don't expect that's the kind of smile I'm supposed to give.

I'm mainly smiling nervously as I wait to see whether my car will pass her second attempt at an MOT, and guiltily as I look on-line for replacements should she not.

If she does, I'll buy her a new sticker

A triad of blessings

Today's given task is to: BE MORE THOUGHTFUL Think about what might make someone happy, then do it!

I read the task before I went out to work, I planned what I was going to do (which involved pension schemes, not guaranteed to make everyone happy, but a good idea for one particular colleague) and failed to get time to do it.

Instead the person being made very happy by the thoughtfullness and understanding of others was me.

 The last person to show understanding and to earn my gratitude was very keen on triangles, and it's true that good things often come in threes, so I'll start with number 1.

At the top of my understanding triangle is my friend Bev Mattocks. I am 3/4 of the way through her book and it is simply brilliant. Although excellently written it makes for hard reading. It's not an easy story, but it's one that is SO familiar. Anyone can (and the newspapers often do) put up a few pictures of emaciated people and say they are writing about eating disorders. There are plenty of first person memoirs by sufferers available, some inspiring, some saccharine sweet, some far too graphic for my tastes. Professionals have written general descriptions from the dry and medical to the flowery and fanciful. But I have never read a better book for describing what it is like to watch helplessly as a loved one is taken over by the beast that is an eating disorder. It isn't just the food. It's the spending hours persuading, cajoling and physically transporting the person to school only to be rung up half an hour later to be asked to take them home again. It's the waiting expectantly, almost excitedly for an appointment only to come out after it wondering if anything has happened at all. It's the awful times of false hope followed by crushing disappointment. It's the guilt, the shame, the hope, the burning love for the person who is hurting so much but just cannot accept your help even if you do have a clue what might be of help.  The book may be too upsetting for some sufferers and their families but it should be compulsory reading for anyone working within the field just to give them SOME idea of what it is really like while waiting on the waiting list and in between the 50 minutes a fortnight therapy sessions.

The second angel of comfort was a medical student. I am ALWAYS comforted by the medical students I meet at work. Every single one of them has in some way or another given me hope for the future of the NHS. This one is extra-special in as much as she has given me hope for the future of those bits of the NHS I care about particularly passionately.

The third was the lady with the triangles - lots of triangles. You probably have actually to be there to fully appreciate Olga Bogdashina Her books may be excellent and I'm definitely going to give one or two of them a go, but her public speaking is superb. As she promised, within two minutes we'd forgotten that her accent is thick and were attuned both to how she was speaking and what she was saying. She presented so clearly and with so much understanding the barriers that may occur between parent and child, between parent and professional who all need to work together but who all have such difficulty understanding each other.  O for the day when a speaker can talk to a mixed group of carers, patients (for want of a better word) and professionals about eating disorders in such a genuinely collaborative and understanding way.

You're welcome....

"Be more welcoming, invite someone you don't know very well round for tea"

Hmmm - I didn't read this until 8pm so too late for today, but really?

Could be awkward

Could be bloomin horrible for the person who we don't know

but why?

Just being IN to make tea rather than my coming in late, and having enough food to share however many, or few, at the table, and being confident that it would really be all OK would be a challenge. Then again just because the Love Life Live Lent booklet comes in pastel colours and a handy format doesn't mean Lent isn't supposed to be challenging. Time to make some changes so that this might be a possibility.

Five Minutes Peace

Was all I had to do today for Lent - spend five minutes sitting still listening to my own breathing.

Unlike Mrs Large in the children's book, I don't have children pestering me every minute of the day, and there were quite a few times when I could have chosen to take my five minutes, but I did have to find a quiet spot. I found the ideal one - my dear old car which also doubles as a playroom, a performance venue, a racing car simulator, a teaching aid, a classroom and a place for live worship - and that's just for the god-children when it's standing still outside the house. She goes in for her second chance at an MOT on Thursday - if she doesn't pass she is going to be very sorely missed.

another swapping day

The task today is to make a cake to share with friends, but we'd already planned to do that tomorrow so today has been a day off Love Life Live Lent to do an Easter activity because every Sunday is a little Easter. The Easter-tide activity of the day has been spring cleaning, which isn't exactly holy, or relaxing, but needed doing.

The Power of Positive Thinking

I've had a couple of occasions today to remember my husband's comment on CBT, most particularly on this book. 

It's ironic really, in a week where my irony levels have already been dangerously high, that once was when a friend wondered on the basis of good evidence whether it would be a good match, and the other was when another friend declared that it definitely was.

His summary? "750 pages of pull-yourself together".

He's not a fan. I can see why and if ordinary, sit down and make a list and work out where your errors are so that you can counteract them CBT wasn't bad enough , there's CBT-E where you sit down and make a list of what you've eaten and how bad you feel about it and are able to challenge those feelings, or not!

So, evidence-based and everything else, if lists of negatives aren't for me yet, and may never be for mine, what about a nice little list of positive things.

Todays challenge is to THINK MORE POSITIVELY Make a list of the good things in your life and thank God for them.

It could be twee. It could be  truly revolting. It could be a very short list. But I'm going to give it a go and make it into something I like.

Slow Down, Not So Fast

A truly sensible one today I think - slow down, take more time. I can't take more time over breakfast because I'd already eaten it by the time I read the task but I will try to take more time over other day to day tasks and do them more thoughtfully.

Time to torture the family?

Today's challenge to ask someone how they are and then really listen sounds very worthy, very suitable, very kind. I do have a problem with it though. Being asked "how are you?" might just about be OK, but demanding an answer long enough to really listen carefully to might be, to my alexithymic lot, about as welcome as asking them to sit on hot coals.

I could have done it at work but we really wouldn't have had time to talk and listen because, well, we were at work.

 So I'm going to sort of cheat again. I'll ask the question of my nearest and dearest but I won't expect anything in return. While I'm waiting I'll be listening to what people think of the new Pope.

I have listened to my dear daughter's comments on the subject already, and I take them on board. They are not a surprise to me and I know what she means. It's probably going to be quite a time before we get the first openly lesbian pope and much of the anger that many feel about him (and would feel about any likely candidate) is justified. On the other hand I'd also like to listen to the opinions of Catholics living their faith and making it work day to day.

An interesting day.

Happy Birthday to You

Today's task is to take care of friends by remembering their birthdays.

I could add lots of birthdays to my outlook calendar, or join one of the facebook groups that sends out reminders but I'm not that trustful of technology to keep things for more than a year, and since most of my friends only have one birthday a year and I may already have missed it, I'm going to hoik out my elderly birthday book from the desk and start updating it.

It's my mother's birthday on Good Friday, and also that of an old friend, so I know I already have some cards to buy. On the other hand I WILL forget some important occasions so PLEASE don't feel offended if one of them is yours.

I'm going to have to defer on this one

Today's task is to save water.

I really can't think of a way that I can do that today. If I decline to do the washing today it'll just get done tomorrow. Likewise the washing up. It is so piercingly cold that I haven't felt like looking out at the garden let alone saving some of the ice in it. I think all I can do now is seriously investigate the possibility of an extra one of these - but I'm not going to buy one until there's a possibility that installing one won't result in frostbite.