Oh La, gimme a break

This week came the news that I am to be paid Carer's Allowance (thanks DWP) and next week sees La's Dad and two of her lovely sisters around to ease the load (ta you lot) so I really do have plenty to be grateful for in my caring duties and get plenty of support.
   In fact, on the whole I think we have set ourselves up pretty well to keep La happy and the rest of us sane. So much so that when one piece of the jigsaw is missing, albeit briefly, I really miss it.
  On Tuesdays and Thursdays the tea time hours are taken up by trips for La with J and C. It's win-win for everyone. J and C enjoy their work, La loves having fun with them and I love those extra 2/3 hours of peace. Sometimes needs must and I have to extend my working day, sometimes it's just great to have the luxury of an uninterrupted chat with another member of the family. Other times it's wonderful to take my time making dinner without La the scavenger stressing me out.
  Sadly, J is ill and is not able to take La out on Tuesdays for now. It's only been two weeks so far but it's Wednesday today and I can feel how much we all miss her. Those tea-time hours are tricky ones to fill. La is tired from a day at the centre but ready for some kind of activity, though not too taxing. I try to clear the decks but there's always a meal to prep and some menial house stuff which has to get done.
  La kind of knows all this and there should be plenty of time but she pushes her luck every evening for food and drink and generally trashes any room she can get into while I'm diverted. Here are a few of her misdemeanours:

• Rips out pages of magazines and leaves a trail or else stuffs them in all kinds of 'helpful' places such as behind the sofa or in the laundry basket
• Opens any letters of packages for other people
• Puts stuff into our bins (eg the above)
• Steals handfuls of food from the fridge, kitchen cupboards or worktops

Perhaps the worst of it is the constant repetition of questions which really do your head in sometimes:

• Where's Daddy?
• Car?
• Bus?
• What to do today
• What's for tea?
• What to do?

Seriously J, get well soon and come back to work - I think La misses you even more than I do!

La caught out by clocks going forwards

This is not meant cruelly but La was in a proper kefuffle this morning. For weeks La has been building up, unknowingly to Sunday's move forward. A notorious bad sleeper, for the last few weeks she has been up at 4am, with the birds just outside her bedroom window, attempting to persuade me and her Dad that it was breakfast time.


Last night, despite being blatantly shattered she did put up a fair bit of resistance at going to bed at 9pm(was 8pm) but me oh my, this morning she was a sight to behold. She was properly shocked when her Dad got up at what in La's world was 5.30am and time for her solitary hour's snooze on the lounge sofa. No hassling me to get her lunchbox ready either, because, guess what, at 7am( was 6am)she was sound asleep on our bed, having risen briefly for breakfast and then succumbed to her fatigue.


Forgive me but it's so rare that we get the upper hand over La that you have to allow ourselves a little chuckle at her confusion. Tomorrow, to be sure, with her body clock reset, she'll be on top of her game and we will know all about it at 4am (was 3am). Joy.

Mother's Day with La and her Sunday bid for freedom

The scene was set for a perfect Mother's Day yesterday - La slept in till 9am, La's Dad had noted a recent survey of mothers which came up with the not-rocket-sciency discovery that all Mums really want on the day is a lie on and a homemade card.

  When the cheery morning summons came from La, who physically drags her Dad out of bed if he's not on his feet before she reaches the bedside, he must have hopped out of the backdoor in his dressing gown pretty sharpish because a card was waiting for me when I emerged, not long after. 
  Now Sundays are a challenge for La at the best of times. Every other Sunday is the day she is home all day with us. With a concentration span as short as hers, no matter how many mini-activities are on hand, her mind wanders and invariably one of us has to abandon the mini job and sort out another situation, which leads to a house and garden full of unfinished mini, mini activities by the end of Sundays.
  A bit of a cooking fest had been planned for a Mother's Day tea party which amused La no end as she scrabbled to steal bit of raw pastry, sandwich crusts, or, failing, that, a quick opportune plunder of the fridge, normally locked. We sort of survived that but when I returned from getting the washing in the front door was wide open....
  Of late La has embarked on random escapes into the front drive but she was not there. I was screaming in panic for all of 2 minutes before La's Dad spotted her plundering the recycling bin in the front garden across the road. As I have written, La loves magazines and she recognised those blue-lidded bins as the ones where all the reading matter is desposited. What with my hysteria and La's nonchalant, indeed  triumphant expression, unfortunately, La's sister M and her Dad were laughing their heads off at this spectacle as we resolutely bolted the front door behind us. 

Letting go of La

Forget elephant, there's a whole herd of elephants filling up our house, with questions about La's future. Sometimes eyebrows are raised at the fact that at 22, she's still living with us. Her youngest sister (M) goes to university in September and after that the elephants could begin to really crowd us out.
  There a simple reason why, despite all these years, there is no concrete plan in place for the future and so many of them were addressed by Rosa Monckton's so poignant BBC documentary this week called Letting Go. Because nothing, nothing ever feels quite right or good enough for our lovely La.
  La is a home-loving girl with her own space and routines which work for all of us. We know she craves more lively company than a couple of 50 somethings who like nothing more than a potter in the garden, a quiet meal out or an afternoon reading the paper. The (few) care homes we have visited are staffed by cheery people doing their best on a very small wage, no doubt, but they feel bland, clinical places, not like a real home.
  So we share Rosa's difficult dilemma in needing to make some big decisions for someone who can't make them herself but sure I have an idea or two.
  I dream of somewhere semi-rural with a real sense of community with La's Dad and I not too far away, increasingly doing our own thing too. Of La initially sharing her life between her new home and the family she has grown up in so that slowly she can let go of Mum and Dad and find her feet somewhere perfect. A place where people remember and revel in her funny little ways as we do. A place where she can make decisions and from new friendships. A place where her days are full of appropriate, seasonal and meaningful activities. A place where she learns to do more than we could ever imagine.
  To get all that I think there will be major battles and upheavals for we can't see anything remotely like that locally. The Day centre La attends has many great feature and La loves it for now - but in 20, 30 years?
  

La's superpowers are finally and quite unequivocally confirmed

I'm overgeneralising wildly here but mothers of children with special needs seem to fall into two camps - the 'woe is me' variety and the 'this is the best thing that ever happened to me' school.

  This blog is the Middle Way, depending on our day, and, if I'm getting it right, I will explain our different take on the whole business. Today, and since Saturday, we are in total awe of La because something we have long suspected has been proved completely beyond a measure of a doubt. We now know for sure that the gal most definitely has SUPERPOWERS!

  Now our La just loves printed matter - a slight problem in a house of bibliopholes, Guardian readers and where her main carer was for many years a local magazine editor. What she does with it is scrunch it, rip it, shred it, then helpfully (she thinks) dispose of most of it behind the living room sofa. I'll come clean here, I am totally addicted to magazines since I discovered the problem page of Women's Own magazine, age 14 years. So you see the problem?

  Of course at the moment, I'm hooked on the likes of Making magazine, Mollie Makes and Craftseller magazine but that doesn't stop me picking up Sainsbury's and Red mags and any others which randomly catch my eye on my daily perusal of the newsagent section of the supermarket. All these are on top of Easy Living which my lovely Mum gets me on subscription.

  So you see the problem? I'm foverer having to hide my precious reading matter from Trasher La and often this is done in such a panic and frenzy, with her fast on my heels that I usually totally forget where I have hidden my stuff when I do allow myself a quiet moment......

  After a particularly bad week for such shennanigans, and much stress (for me, not La)last Friday when La was out of the building I calmly put all my unread papers and mags in a new place which I had hunted out and thought was truly ingenious - see pic. So where were they? 

  Would you have looked on that slender gap between the floor and the chest of drawers on the off-chance of finding those illicit secret treasures? I was super careful to really shove them right to the back so that not a tiny scrap of paper was visible from anywhere other than a horizontal position on the bedoom floor, wedged between the bed and the wardrobe.

  So guess what? La's Dad found her prostrate on the bedroom floor fishing it all out one by one early last Saturday, not 24 hours after putting the in this (you would think marvellous hiding place) when she through the coast was clear. I do not lie - explanations gratefully received. I thank you.

Happy holidays

Spring is in the air and the Easter break is looming, so why am I trying not to think about it? Over the years we have developed a La-friendly way to travel which involves minimal stress and as much relaxation as it's possible to have with La in tow.
  So that would be travelling by car to a secluded self-catering house with a swimming pool for La to cavort uninhibitedly (see left). Last Easter's break in Camarthenshire in glorious weather, proved ideal, but guess what? We're not sticking to the formula this year and I for one, am cacking it.
  My sister has raved about Almeria in southern Spain for years and loves it so much she has bought an apartment there - a visit is long overdue. La's Dad decided it had to be done and it has to be done by aeroplane with the World's Favourity Airline which he works for.
  The trouble is, since a 2009 weekend in Edinburgh when we did go by air, I have sworn never to set foot in an airport with La again. For La, you see, does not cooperate with  the various security procedures now in place, let alone respect the queuing, throngs of fellow passangers and body searches. If I tell you that the Head of Security was summonsed at Terminal 5, Heathrow on this occasion, when all other passangers had boarded, can I leave it to your imaginations as to La's behaviours that day? Do you really want to know that La simply would not stand still for the security photo and was running round the departure lounge like a loony at one point shouting 'weee bomb!' (for some reason) at the top of her voice.
  Her good old disabled parking badge saved the day in the end as it convinced Mr Head of Security for Terminal 5 that she was not an imposter but a harmless if exceedingly eccentric young lady with learning difficulties.
  All this was before we were faced with the challenge of sitting La in a confined space with grumpy strangers in close proximity for an amount of time out of our control. Shudder.
  This Easter's experience, can't get worse than that, surely?

Baby it's cold outside

.... well not particularly but La has a newish word she's really working right now, to brilliant effect. 
  I remember precisely the moment when she discovered she could get her lips around this word. We were watching a DVD of the Dylan Thomas film The Edge of Love and the moment Sienna Miller and Kiera Knightley too a paddle in the nippy Welsh sea, La startled herself(most) and the rest of us by commenting that it was 'FREEZING!'
  Since then, this has been a bit of party piece and sometimes it's appropriate, more often, not so much.
  Yesterday and today we have been treated to a startling new development; the word now carries with it a full physical performance so La says 'FREEEEEEEEZING' and performs a full body shimmy as only she can. A lot of vibrato is put into the voice for added effect, as if that were needed.
  One of the aims of this blog is to share more about the legend of La. Lots more to come.

Introducing La

So where do I start telling you about La? There are many things to say about La. La is beautiful, intensely musical, 22 and a half years old, a bit of a clown, oppressively affectionate, cheerful and sometimes overwhelming.
   La is also epileptic, long-sighted, doubly incontinent, takes endless delight her own noisy farts and has severe learning difficulties ... all of which lead to some pretty interesting behaviours for us all to deal with.
   Sound like fun? Well actually, without wanting to trivialise all this, yes it can be! If anyone had told me 22 years ago that a night in with La could be quite a treat, that her sisters would pine dreadfully for her when they are away and that she quickly becomes quite a popular person in many places she frequents, would have been quite amazed.
  When alarm bells started ringing about this placid baby nobody could tell us how things would pan out and with a mother's imagination being what it is, I did fear the absolute worst.
   In many ways, the worst is what we got but there's more to it than that.