Big day for La

Yesterday was a challenge because La's birthday has to be approached with great sensitivity. Over the years we have underplayed it too much and more often, overplayed the day with upsetting results for poor old La.

Bear in mind she can't anticipate her special day so we break the news, in a nonchalant manner, the day before. On the day it's a tightrope between making her feel special and not letting her get so emotional with all the attention and treats that it all gets a bit much.

This year we gave her birthday kisses and cuddles and 2 gifts before she sent on her way to her usual routine and as soon as she was out of the door, the frenzied planning and cooking began to prepare a surprise party for her and seven nearest and dearest.

When she walked in at 4.30pm the fun began and continued for 5 hours until she fell asleep on the couch.

Highlights this year?

• Her delight at opening up her stuff
• The banana birthday cake with Belgian chocolate ice cream
• La's frequent bursts of applause, which we all joined in, in joyous celebration of the day.

At a time when a terrifying report is published about abuses in care homes I just pray that we can spend many more like this, all together.

Terrific Tuesday

.. or is it?


La has had a pretty cool few days. 

She is most emphatically one of Danny Boyle's new fans, following on from that stunning Olympic Opening Ceremony, which she spent mostly on her feet, dancing and singing to so much of her favourite mooosic.

La is tolerating Olympic fever which has arrived in our house. She was impressed to find the Kaiser Chiefs playing at the beach volleyball - so was La's Dad (or that's what he told me anyway).


Today at last, we have the resumption of the Tuesday teatime trip for the first time in over 4 months. Miss E, the new care worker charged with La has shadowed Thursday regular C twice now and we're all set, this afternoon for the real deal.


The signs are good. Miss E, just 19 years old seems calm, is experienced with young adults like La and seems keen.


But of course it won't be up to Miss E... it all depends on Miss La...


I'm sure for the last two weeks she has viewed Miss E as a rival  for C's attention and special time. I have tried to prepare La for her tea time trip with Miss E and she has switched between enthusiasm and refusal at the prospect.


In my eagerness for a relatively relaxed early evening I really must resist pushing La out of the front door and act all nonchalant.


Will let you know.

La goes shopping

Like most of us, at some point in the day I have to nip into the supermarket. Today found me in the soft drinks aisle perusing the elderflower presse and wondering whether to get another bottle to enjoy in the garden tonight (as we did yesterday).

So it wasn't unusual that in a busy supermarket, another shopper was having the same thought, but it was surprising to observe, from her rose cologne, that person to be in fact La herself.


I scuttled away and spent the next 5 minutes or so spying on her and her party on their shopping trip, until the inevitable happened and she spotted me.


A full belly-to-belly embrace resulted, as well as numerous kisses. My delight was not lessened by her first question 'Where's Dad?' and I was so happy that after a brief chat with the others she was fine to say goodbye and continue her shopping.


Later I saw her waiting patiently in the single-basket queue. Her exemplary behaviour throughout may have been helped by the presence of a big black young male bodyguard/care attendant.


So proud of my daughter.

Bedtime with La

Just look at La - I have seen this gorgeous face at rest for nearly 23 years and it will always be one of the most utterly beautiful things in my life.


Getting to this point in the day isn't as easy for us as for most people.  La manages to go through periods on an astonishing small amount of sleep. When she's sleeping well, a certain procedure must be followed and, suckers that we are, me and La's Dad are slaves to it.

You know how we all have our funny little routines and ways? Things we do day in, day out without even thinking and which would astonish even those very close to us?

Over the weekend it occurred to me how ridiculous the bedtime rituals are in our house. They have evolved into a rather odd and somewhat prolonged sequence of events which is by no means 'normal' for 22 year olds nor for their parents.

How we long sometimes for the days when at 7pm four little girls were bathed and in bed. Of course three of them are fine, it's just that La....

Well, in with us every night we usually have a pretty companionable evening doing what most families do which involves cups of tea, naughty snacks, usually involving cheese, V+ on the telly and intermittent observations about the day's events. 

There comes a point though, when we all need to wind down and that is generally at the early hour of 9pm. Luckily, La on a good day, does seem to need masses of sleep so if we're very lucky, she may just go to bed if we commence the ritual at this point:

1 Dispense sodium valproate (anti-epilepsy drug)

2 Collect all La's 'stuff' which by this time in the evening encompasses a duvet, pillows, cushions, various magazines and shopping bags and carry upstairs - can take a few trips!

3 Close all downstairs doors - a fire precaution which La is fastidious about

4 If sisters are out, ensure front door is unbolted and outside light is on

Once upstairs, we do our cleansing and toothbrushing and me and La's Dad get undressed. For La to be happy I need to be wearing a nightie and a dressing gown at this point. La's Dad, for some reason must be attired in boxer shorts and socks only (yes I know!)

Before we can proceed to La's bedroom, La's Dad's computer must be emphatically shut down.

We then progress forth to La's room down the landing with La's Dad in the lead, then me, and La bringing up the rear. The landing light is switched on.

Once in the bedroom;

1 Her music is switched off and curtains drawn

2 La gives me a big hug/lurch and asks any /all of the follwing questions'what's for tea?' (tomorrow); 'what do we do today?' ' Go car?'. I need to come up with a plausible, acceptable and truthful answers for her to feel peaceful

3 She settles into bed with all her many possessions

4 She arranges her special 'sniffy pillow' over her head

5 La's Dad places her duvet over her and with a cheery 'goodnight! we retire and switch off the landing light


(If we're away from home, this routine must be replicated as closely as possible - a challenge).

So far, so 'normal', you may be saying, but what if it's one of the many nights where all is not right with the routine. To do all this once is quite a rarity. It may be that

1 A crucial pillow is missing

2 A crucial parent is missing
3 A crucial we are no idea what is missing 

4 La has managed a sneaky nap in the late afternoon/early evening

5 La is not feeling well

6 La, is full of energy/excitement
7 Heaven help us, there's some kind of outside disturbance in our usually sleepy street and garden

Of course most 22 year olds would be out socialising at this early hour so problem 6 is a tricky one.

If we hit any of these issues, we retire to our bed and pretend to be asleep. This is meant to make La bored but sometimes she can

1 Attempt to get into bed with us

2 Lie down on our bedroom floor and drop off - problem!

3 Drag us out of bed only to repeatedly refuse to get into her own. Unfortunately there are numerous musical instruments in La's bedroom and La may ring the bells, bang the bongos or attempt to make a noise out of a French horn mute.
4 Ask, longingly for her beloved sisters, her Ga-Ga (grandad)and his two dogs.

We have to try to keep straight faces or worse, be monosyllabic and control our exasperation as La should not detect anything from us rather than a reassuring fatigue on our part.

This process can continue up to midnight - three long hours.

However long it takes, beyond that I need at least 30 mins of La-free time before I nod off. La's Dad, like her, is out like a light. Bless them both.

Oh happy day!

See that - it's my smile taken just now because today looks like it's gonna be a really good day for me and La!


Back in March I started moaning about La's Tuesday trip getting cancelled, often without warning. La and I loved that two hours because she got a change of scene and I had a bit of a break.
(Despite all these years of motherhood, I can't quite explain why I only really get into my stride work-wise at about 3pm, just when the day has to be devoted to caring for various people.)


One of the reasons this blog has been a tad quiet of late is that the slot has remained uncovered for all that time. What's more the precious remaining Thursday 3 hour slot has been patchy due to illness, annual leave, etc.....aaaarrgh...


..all of which has left La and me a tad sad. On evenings in we used to go in for cooking marathons but of late La's been determined to thwart me by:

• eating any uncooked ingredients I'm prepping up
• leading me towards the ironing board (why?)
• insisting we hang out together watching (crap) tv in the lounge

Since March La and I have spent all this time when she could have been out having fun, doing our best, but, thwarted by this vile weather, we have passed these 'lost' hours in many ways:

• Watching too many episodes of Escape to the Country or Place in the Sun Home and Away.
• Rather guiltily becoming addicted to a rather rude French period drama set in a brothel
• Experimenting with eating a little paint stripper (La!) the time I decided I could finish a spot of DIY
• Rearranging her bedroom
• Clearing out various household cupboards (booooring)
• Finishing mountains of ironing (me) while La snoozed

As a carer I have vered from being passive and patient to getting really mad that La's 5 hour weekly allocation was not being covered over a long period. In the latter mood, I rang the agency involved and they blubbed on about illness, staff shortage, etc and could not see La's hours being restored 'in the near future'. Try explaining that blather to La, who on Tuesdays and many Thursdays is especially restless.

The 'explanation' made me madder and after many attempts I managed to get through to La's social worker. She promptly called the agency involved and, hey presto, as of today we are getting the 5 hours back. (I'm not going to dwell on why I was fobbed off and it had to take a call from an official person with an eye on budgets to get things magically shifting.)

I have to say that this same social worker arranged for my annual carer break allowance and weekly allocation to get into the community (yoga classes in my case)so she's a star.

Not something many carers say a whole lot about social workers but she stood up for La and wouldn't listen to any excuses so THANK YOU!

La the star

It feels wrong somehow to say that sometimes life with La is less angst-ridden than it is with our other girls. I'd go further - sometimes, just sometimes her behaviour offsets their issues and gets us all through.


This week has been a weird one with Becky coming back from university for the summer, Melissa finishing her A-Levels, left school days behind her and La's dad away on business. All these culminate to get lots of emotions and stresses whirling about in the house.


La is extremely sensitive to all these vibes and is perfectly capable of quite spectacular meltdowns but somehow she has not let herself get sucked in over the last few days and as a result has kept me going by just being so calm and grounded all the time. Looking after her and spending lots of time with her has somehow kept me sane. For example, when she needs her tea there's just no way I'm going to get bogged down with any stuff, happy or sad, that has come into the house.


Last night I noticed that special yoga breathing I have been trying to perfect every day for 3 months now - La does it quite naturally in her own sweet, peaceful way!


Thanks for the lesson, La.

La is foxed and brings home some exciting news

Sometimes my life with La feels like a constant struggle to stay ahead of the game. I can feel utterly calm and in control, she comes in from a day at the Centre and within minutes I'm a gibbering wreck, screaming with confusion as I race around trying to restore domestic order.

It would be fantastic slapstick comedy to any observer as La moves around the house, distracting and diverting me so that she can get away with her cunning plans:

• If I forget to bolt the front door - she's on the drive in a flash, alarming passers by as she heads towards the wheels of a passing bus
• If I forget to lock the fridge - she's in there in a a nano-second grabbing fistfuls of tinned tuna, leftover dinner, mouthfuls of cheddar cheese, cold falafels, etc, etc
• If I forget to hide the paper or a magazine underneath a mattress - in the blink of an eye, it's trashed with ripped pages littering the floor of every room in the house
• If I don't hide the bread dough - she delves in and her fingers and face are adorned with the sticky stuff

However, after a couple of weeks where La has been determined to thwart all (in theory, for me, therapeutic) bread making attempts (and the results of) this week my two blogs have collided and I have made breadbags out of an old sundress which did belong to La. It's possible that with time, La will rip them open, such is her ferocious strength but for now she is puzzled by the knots in the ties and the loaves (and crumpets)are safe.

La on tv

A few weeks ago, a charity called Music in Hospitals paid a visit to La's centre and a film was made demonstrating their work.

The fact that La enjoyed this came as no surprise to us. I remember a GP telling me when she was a baby that La would certainly excel at some random things in life. At the time I thought she may have been fobbing me off, softening the devastating blow for a mother who had just been told her child had a severe learning disability, but very quickly we realised that La is in fact a musical genius. When I say genius it's possibly an exaggeration but you anticipate the final chord of Stravinsky's Rite of Spring after hearing it once? 

By promising 'music', you can get La to do most things and her tastes are wide. She responds wildly to a strong beat and any kind of discord with a repertoire of innovative dance moves and improvised singing. Bad playing by others is her idea of heaven - at the moment La is loving the non-talky bits in the current BBC4 series Punk Britannia, for example. Every summer she enjoys most of the televised Proms concerts.

Back to Music in Hospitals, as it turns out that La's contribution to the music session was such that we have been asked to grant permission for La to be shown in the final edit, to appear on The Community Channel.

If this is ever online, I may just post a link and reveal La's identity in what can only be all her glory. In the meantime, we await the (in the bag)  Bafta.

Body beautiful

From the moment we start to think about a newborn baby's name,I'll bet most parents have some degree of conflict between a name they personally truly adore and one which will work for their beloved baby for their hopefully long life in the big wide world.


That's just the beginning of the decisions we make on behalf of our children, from the best school to suit their needs, to the clothes they wear to the clubs we enrol them in. I'll be honest, as my other children have grown up it's been a relief not to have to make all these decisions, as well as a delight to observe their imaginative, unexpected and exciting choices in seemingly banal matters.


For La, aged 22, we are still making these decisions and it doesn't get easier because she's an adult know, interacting with the world as a young woman. 


It falls on me, mostly to style her hair, buy her clothes, pick out her perfume, with an eye on her achingly stylish sisters, yet anxious not to make her look silly. La is a true eccentric but to dress her in a way which truly reflects her personality could come across as plain weird.


Yes, I know all this seems mundane and trivial but the personal is political, as they say, and since she has reached puberty, occasional comments have been made by the family about La's hairy legs and armpits. It's that time of year when we start exposing more. La is legging-less and her sleeveless summer frocks are starting to get an airing and there's no doubt about it, her hairiness is confronting me again.


For all her adult life, La has sported armpits a la Julia Roberts - has it drawn attention? Is he mocked behind our backs on beaches and in public swimming pools? Do people snigger on a summer's day when she mops her brow when wearing a sundress?

Last week, I admit, these anxieties overcame me, 'other people' are enough of a problem to La, she draws enough attention to herself without me adding to the spectacle. So I succumbed to the ritual. La cooperated calmly while I shaved her underarms in the bath.


Have I betrayed my own principles and somehow sexualised our learning-disabled daughter or am I just ensuring La conforms to the norm among women her age? 

Dilemmas, dilemmas

You have probably noticed that I make some effort to disguise La's most lovely appearance on this blog. It goes without saying that in our eyes she is a gorgeous young woman, if somewhat vain, but without being able to ask her if it's ok to out her pictures out there for the world to see, I'm reluctant to do so for now, at least.


Other decisions we make about her life maybe seem equally trivial (or are they?) are sometimes challenged and have us frequently pondering out loud on their implications.


One of the biggies is the issue of the Food Police. La has no preconceptions about how she should look or is any way capable of making a connection between what she consumes and its effect on her health. Added to that the sodium valproate she takes to control her epilepsy does give her a raging appetite and the end result is a bit of a belly and a rather rotund physique.


So how far should her carers go to limit what she eats and control her food choices? Yesterday she returned from the Day centre with a gingerbread man, flouting my instruction for fruit-only purchases. In the past I have found receipts for crisps and mega choccy bars in her bag. They would argue that the meals provided at the centre are all balanced and healthy and trips like this are for treats. I give her pocket money, La is over 18 and deserves some autonomy every once in a while. 


I kind of get the point.

I think my other daughters would describe the food I prepare and provide them as super-healthy compared to what other young women eat. And that's before we bring in the alcohol which, thankfully, is not an issue with La. I know I could actually go further so to me it feels like there are compromises. As with all mothers, if I were to make what I want, our dinners would be very different most days. We eat a lot of organic, almost always cook from scratch, limit red meat and fried foods and it's wholegrains, wholegrains, wholegrains for as far as I can get away with it. Too many refined carbs and fats are a bit of a no-no for me - but that's the current perceived wisdom, isn't it? The kind you find in all the mainstream recommendations about food and diet?

From the moment I started consciously controlling La's portions and diet, she immediately lost a significant amount of weight. How smug was I? However, she may be 'slow' but she 'gets there' when it really matters and after about a month, she became wise to my campaign and battle, as they say, commenced. A battle, I might say which has been raging now for at least 5 years.

In moments of despair, La's Dad does point out that she does not seem to be gaining weight. (She now resolutely refuses to stand on the bathroom scales.)  Although about 5' 3", she's a steady size 12/14 and has been for some years; when you look at her peers in the various places she attends, she's comparatively anorexic. I look back on the photos of La aged 13 and she's a slender young thing. Now, at best, she's 'chubby'. Am I wrong to get upset about this? Am I going too far to project my own ideas of physical goals on her?

Added to all this is that La is and always has been such a great 'eater'. She will devour four or five helpings of granny's apple crumble and custard while I'm balancing the benefits if the pleasure that is giving granny and the toll it will take on La's trousers.

Still, I persist. There is a bolt on the kitchen door which La has now mastered. Hardly a biscuit, cake or crisp inhabits the kitchen. We do love to bake at weekends but I get twitchy when the whole lot is not eaten at the first family sitting because La can sniff out leftovers hidden in the most ingenious places at the back of cupboards or hidden parts of the fridge.

The breadbin is a tricky one, as you can see, let alone any fresh-baked bread being left out to cool. La considers those an open invitation to gorge, which can have me screaming with frustration.

Last year we bought a fridge lock from America which is a godsend, I can tell you, especially as all the fruit now has to be saved in there. When I open the fridge to grab a quick carrot for the salad, La is upon me, out of nowhere, ready to grab at the leftover quiche or a slab of cheddar.

You only need to look at La to see that healthy, fresh, organic it may all be but too much of anything does not keep you slim.

In the next post, more dilemmas, and this time it gets even more political...

Doting Dad

I may be La's 'most of the time carer' but for a father with a full-on job and a few other, err, interests which take him away from home, I have to admit that when he's here, La's Dad is her favourite carer because of the attention he gives her.
  I found this photo today, taken about 20 years ago. I'm just days away from giving birth to Becky, La is wearing a jumpsuit I made her with bells attached to the belt and Dad's Dad is all dressed up behind us. I think it must have been a New Year party at his parent's house. La looks as if she's amused by the balloon I'm bouncing about in front of her and La's Dad seems to be looking on pensively, no doubt contemplating the future, near and distant.
  It has to be said that La and her Dad share a lot in common, including a devotion to 'fat boy' food, Stravinsky, dodgy 1970s bands (Rush, anyone?) and general loudness. If things were different, I bet she'd be playing a very loud instrument very proficiently by now, going off to football with her Dad on a Saturday and her bedroom would be just as messy.
  Whenever I return, having left La in her Dad's care, the house is trashed but there's a special, quiet, happy vibe about the place, plus evidence of a lot of fun and some hearty cooking and eating.
   It goes without saying that relationships where there's a disabled child are some of the most fragile so we must be doing ok to be still together so long after this pic was taken.
  Sometimes, I have to admit to envy of the way La's Dad interacts with her so utterly uninhibitedly. He never, ever fails to tell her how beautiful and clever she is, if she is at a particular moment and as he did this very morning. And she is, as is the incredible bond between them. 


La is lucky and she knows it. So I must be too.

Just me and La

La (left) and me

'What do you really want?' My yoga asked me today and like all carers, I found that one especially hard. My life feels so tied up with La that sometimes it feels like it's all a succession of compromises around what La will like or tolerate. I really don't want to sound whiney or pathetically passive but what I want doesn't very often come into it.

 At the moment La's Dad is away on business so it's full-on, undiluted La and me, with occasional moments of light relief provided by La's youngest sister when she's around. La is at her day centre between 9am and 4pm so the hours between are a mish-mash of doing stuff La can't stand me doing while she's here (making telephone calls, shopping, working on my computer) clearing up after La and then fitting in time for myself.

 This morning La woke me up at 4.30, 5.10 and 6.03am and then I gave in, made her breakfast and kicked off the morning routine. Every action is duplicated whether it's loading a toothbrush or putting on a pair of socks. Once for La, once for me. There's a twist as La is less than cooperative through most of this: while I make her breakfast and packed lunch she grabs food on the worktops or what she can snatch while the fridge is unlocked, she's reluctant to move the limbs when I'm dressing her, clamps her mouth shut when I attempt to brush her teeth and lies down flat when I try to get her hair into some kind of order. You could call this stubborn defiance boringly predictable but it's also quite impressive and rather funny if you can keep your cool and not show your frustration as the clock ticks away.


 After 4pm, I'm led by La. I make the tea, maybe do some ironing, clear up, get her ready for bed.

 Right now, it's 7pm and we are already in our pjs, everything is cleared up and the evening stretches ahead of us.

 I think about the rest of our family - La's Dad is probably getting ready for a meal out with colleagues in Madrid, the three sisters are with their partners/friends and the night is young.

 There's a certain comfort to this easy companionship, sitting here with La nodding off on the opposite sofa, Channel 4 news in the background, there's even a homemade loaf baking in the oven and some new books on the shelf next to me... as well as a feeling of life just slipping through my fingers while I look after La...

La in the car

La was in Respite Care on Saturday and Sunday, Monday was a bank holiday - Dad off work, La's day centre closed but forget the vile weather forecast, a day out it had to be.
 At home, La nags pretty incessantly for 'Car, car' so car it was. La's Dad proposed that old standby, a trip to the seaside but with heavy showers, low temperatures and blustery winds on the cards, I came up with the idea of going to the town of Battle for a dose of 1066 and all that. La's Dad agreed it was a good idea. We had driven through a few times on our way back from Hastings and berated the fact that we had not allowed any time to stop.
  Battle met a few necessary criteria for a successful day out for La:

• A bit of a drive, not all on big roads
• Plenty fo eating options, not all fish 'n' chips
• Stuff to see, though not an overwhelming amount which would mean La zones out and we became frustrated

So three of us bundled into the car with various necessities of the day - which for us meant apples, La's music, baby wipes, spare pads and our blue disabled badge. La always travels with one or more of her cherished 'sniffy' pillows, a magazine and as many plastic bags as she can smuggle on her person into the back seat.

  Once en route, La invariable changed the whinge from 'car' to anything else she can think of, notably home, bed, bus, Anna, Becky, etc.

   In the end, she gave up, distracted by the hordes of motorbikes seemed to be heading towards a day out in Hastings - La just loves exactly the thing that annoys the hell out of us,  their noise.

  About 20 miles before we arrived, suddenly our nostrils were assaulted by a stench that was not going away. Travelling with an incontinent adult has its moments, however prepared you are. We were lucky and found a service station with a disabled loo... to find that after all that we did not need it as a discreet and casual check of an indignant La as she was persuaded to step out of the car, proved it was all just a very bad case of extreme wind. This discovery made La smile quite smugly at her relieved parents but as La's Dad said as we resumed our journey, 'it's only a matter of time.'

  I won't trouble you with the delights of Battle, I'm no expert; La permitted a mere cursory glimpse of its historic delights as she galumphed up and down the main street and into the various eateries. (William the Conqueror's magnificent Abbey is for another day, sadly.) La's main concern, as ever, was lunch and we did venture into a couple of delis, only to be put off by the throngs of tourists fighting for shelter from the cold and the few last tables and sandwiches.

  Our eventual experience of lunch at The Pilgrim's Rest has, I have noticed, been oh so accurately reviewed by previous visitors. Let's just say it was Fawlty-esque with enthusiastic but hilariously incompetent service. Which was a shame in a way because the food was fine, when it finally arrived and the building and front garden total stunners.

  Walking back up the main street, the inevitable happened, of course and La urgently announced 'Pooh!', by which time, of course, it was too late. La's Dad had noticed signs to a disabled toilet in our car park so we hurried her past all the other day trippers in the hope they did not notice the toxic smell.

  In brief, due to La's extreme cooperation and goodwill, we managed fine in the end but WHY ARE DISABLED TOILETS SO OFTEN LOCKED? It didn't even have an unhelpful sign to tell us we needed a special key from the town hall or wherever which is not bloody good if you are random, if desperate, day trippers.

  Rant over but a classic and pretty successful day out with La and plenty of car.

  

The sisterhood

La is all the wonderful things she is due to a large extent, in my view, to growing up in a big, bustly family such as ours.

  The second of four girls, one by one they have grown up beyond her and to a larger or lesser extent, become her carers. My Mum has a poignant memory of a tiny Becky spoon feeding a much bigger sister when she had to be well under 2 years old herself.

   Looking back, I can get quite teary worrying about the effect having such a needy, noisy and embarrassing sister must have had on them when they were really tiny. Anna, age 3 had waited quite a while for a sibling companion and what did she get? A whiny little sister who puzzled all of us and took so much of her parents' time and attention.

  La was two and a half when Becky turned up, a bruiser of a baby who nonetheless was defenceless when La developed the horrible habit of pulling at the baby's lustrous hair. She still bears a tiny scar near her eye from a time when La woke her up by clawing at her face.

  Melissa, five years later, had to cope with the same old crap. La still needed a buggy so I often had the baby in a sling as I manoeuvred a double buggy. It wasn't long before an ever-independent yet tiny toddler Becky gave up her seat to help me push the oversized La with her sister 5 years younger.

  As La's youngest sister. Melissa will be off to university in September, it will truly be the end of an era.

  La, her Dad and I, but most of all La, who can't work out when she will see them again, suffers most. Ironically, Anna and Becky probably miss La back rather than their parents. It's not as if they can have a cheeky Facebook exchange with La or a quick chat before they go out for the evening to keep the love alive. 

  When they call they want to know what La's up to and I have to relate the last funny thing she did or said. Only time will tell whether they are more positives than negatives growing up in a family such as ours. I just hope the girls look back and know, although it was tough, we really did our best.

Love letter to La

                         


You could say I have been known to moan and groan on this blog, whinge about life as a carer and the toll it all takes on family life.
  At it's centre, and indeed in its title, is the glorious La and today I want to cast all the negatives aside and write about La's magnificent persona and why we all adore her so much.
  Impossible to put into words, you really have to meet this spectacular individual to get the gist, but here goes.
  At the risk of sounding like an award ceremony nomination,here's what La is and how she affects the rest of us:

• The most original dancer I have ever seen
• The sloppiest kisser in the world
• The greatest appreciator of my cooking in the family - can't remember a refusal in 22 and a half years
• Fantastically musical - amazing retention of a tune and innovative compositions
• Hugely cheerful at all times - great person to have around in the bad times
• Overwhelmingly enthusiastic about life
• Uncomplicated in what she expects of other people
• An original sense of style with her own tremendous pzazz
• Adoring of her three sisters 
• Endlessly curious
• Takes pleasures in the very simple things
• Contented with her lot
• A quirky sense of humour which makes her the family clown, by her own choice

.......the be continued ........

Coping strategies

If I gave you a penny for every time someone said to a carer, 
'You need to look after yourself'...well, I'd be truly loaded, naturellement.
  In those moments when you are free of your caring duties, carers probably have work, other children/family members to attend to as well as housework, admin and all the crap we live with that has to be got through. Cast that aside and then, if you're lucky there's a tiny space. Some carers swap notes at carer groups, others even go out and work in special schools/day centres or volunteer as supporters.
  I have to say I have shunned all that like mad, desperate for that non-carer identity, keen to be somewhere, doing something where people do not necessarily know that I'm a carer and have no idea that an hour ago I was wiping a 22 year old's bottom and will be maybe an hour hence. It's not that I'm in denial. it's just that I need a break in every sense from the role.
  For 11 years I had a pretty stressful job, albeit working from home, running a Families mag. Now (praise the Lord), that is behind me and I have a new venture, Carer's Allowance and lots more time for my de-stressers like gardening, reading and catching up with my beloved friends. Best of all though, after a Carer's Assessment last year I was awarded a modest amount, per week to 'access the community'. 
  'Access the what?' Well basically what is being suggested is that carers need small bribes to 'Get out more'. It takes a while but a dollop of money is plonked into a special bank account specially designated for 'Getting out more'. You have to supply a reconciliation form every quarter with receipts, etc to prove that you've not been squandering it on gin and if it's unspent, you haver to pay it all back, in my case to Surrey County Council. What's not to like?
  I was pretty non-plussed/too stressed to begin to imagine the possibilities at first. The social worker tentatively suggested I try Yoga and, devoid of all other ideas, I latched onto that and thank goodness.
  To use up my allocation I needed to go twice a week which takes about 5 hours out of my week. I never thought I'd make it but now I'm not sure how I managed before.
  What does it give me? Everything anyone has ever told you about yoga/meditation/Tai Chi - empowerment, strength, calm, insight, peace, sleep - all of which has to be great for La too.
  So thanks Surrey CC - it would be stretching a point to say in these hard times I get Yoga on the state but it's almost true!

La loves Spain

Some holidays with La have been historically horrendous for reasons I may return to another time. Not this one. It may be a different country to the usual but she has everything need to complete contentment:

• Her immediate family's (almost) full attention
• A spacious space to retire to
• Satellite tv
• Car rides with 'mooosic'

What's more, she has made a new lunchtime discovery 'El menu del dia' - a cheap and cheerful three-course meal widely available here which most definitely suite her taste.

The locals get her too and she's given the bread first and enjoys all the rest - the spicy sauces, the garlic mayonnaise, the chips with everything and the delicately spiced rice pudding to top it all off!

On Good Friday she even coped with the crowds and enjoyed the religious procession of statues because they had bands and drums.

 No wonder she has a new word '(S)Pain!' which she repeats with great wonder.

Spending lots of time with La

At times, quite simply, La is a delight. A peaceful and relaxed family member who adds mostly humour to the proceedings.
  For the last few days she has replied:'Yes please!' to every suggestion. Ok during the holidays most suggestions are quite amenable.
  She managed to navigate the much dreaded passage through T5 with the utmost of ease. Every official-looking uniformed person La encountered was told, 'I want to go home'. The security guy checking our hand baggage and shoes for bombs could see the funny side. The BA woman on the check-in gate, not so much.
  La loved her breakfast in a Madrid bar. It was full of men reading the sports reports while they munched on churros. La lurched into their personal space hoping to make a grab at their reading matter but with a quick waft of the hand she got the message ok and moved onto the next candidate.
  Only two horrendous moments so far. The first in a supermarket in the middle of nowhere where the locals were so intrigued by the eccentric stranger in the shop they gathered in huddles to stare and blocked the aisles. I'll admit, panicked by the fact that I didn't know how to say 'excuse me' in Spanish I had a mini meltdown. So actually it could have been the mad mother who they are still talking about there.
  The second event was when she leaned on a display cabinet in our holiday home and brought some glass ornaments smashing to the floor.
  One day, how we will laugh....