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.