Come in....

The time is 11:45 last night and I am inviting you into our bedroom. This is what you see.  (no, sadly the guy in the picture isn't me!)

Helen is lying the wrong way round on the bed, head where her feet should be. The reason? That bedside cabinet on the right is full of nail varnish, nail varnish Emilie found and tipped out into the top drawer. The smell pervades the room, but is particularly strong where Helen's head should be. I try and breath through my ears.

The floor is strewn with clothes. You noticed that, huh? Thought we lived like slobs, perhaps? Well Emilie needs clothes on the floor to feel secure for some reason only autism can explain. Look behind you - the landing is the same. Of course you are a privileged visitor, you don't normally see this, those of you who know us in real life might have noticed we never let you upstairs. Now you know why - although the toilet can be pretty scary too!

Back in the bedroom. You will have noticed by now that there is the sound of a mountain stream, rushing and gushing. Even Emilie can't divert a stream through our house, although she once brought down the kitchen ceiling by blocking the bath overflow with Tinky Winky (or was it Dipsy?) The sound is of-course coming from the stereo next to Lucie's bed, where she lies with industrial (literally) ear-phones on. The stream CD and ear-phones mask some of the sounds of Em as she shouts delightedly in the room next door, still bouncing on her bed. As you know, the children are made anxious by each other, this is why we want to convert the garage into a bedsit for Lucie, to keep them truly apart and lower their stress levels. Lucie sleeps in our room because she got frightened on her own in the study. She went there to escape the noise of her sister, we even brought her bed down and converted my study - which is why I'm typing this from furniture with heart-shaped motifs! Her epilepsy is another reason for keeping her close. Her original bedroom stands empty. Logic has no role to play in this house!

Me? Yes, that is me in the corner. You can only see my lower half poking out behind the curtain). I am shining a torch into the front garden, watching our beloved and much spoiled (special food, water, hogitat) hedgehogs playing in the garden. Sometimes I wish I were a hedgehog. Anything but this day after day, night after night.

Yes - Helen and I are shattered. Not through any single incident, these summer holidays have been remarkably incident free, just the one epileptic fit for Lucie and even that happened at the Glen. We are shattered because caring, quite simply, is bloody hard work. The repeating the same conversations over and over. Keys being stolen and hidden in the garage, us having to search. The dealing with Lucie's anxiety about things we cannot change and watching her tremble as a result. Emi getting distressed because the primary school clothes (two years old now) no longer fit and replacements cannot be bought. The smell of nail varnish, the smell or poo. The blocked toilet (more bastard teletubbies, I suspect!). The constant pressure of watching the children cause each other distress just by their presence. Emi comes downstairs, Lucie immediately marches upstairs. Lucie spending all her time in a small wooden summerhouse and Em seeing this as excluding her from the garden. All of us trapped in the house, slowly driving each other insane.

Yesterday, I asked Helen to sum up in one word what parenting our two daughters is like. You will understand here that it was the end of the day and we were both exhausted. The words we chose were not what we really think - human emotions react temporary circumstance, not just reality. But I chose, 'futile', Helen - 'unbearable.'

You see, tiredness is a funny thing, there are moments when you almost 'hate' your child. Hate how they demand so much, until you are on your knees and then they demand twice as much. Last night for instance:

Back in the bedroom, it is 11:50pm, I feel a little less stressed now and no longer need hedgehogs. Back in bed, head next to Helen's feet I start to unwind, you watch me close my eyes.

BANG!

Emilie bursts through the door - lights are switched on, Helen jolts awake, so does Lucie. Apparently, Em's toy shark has run out of batteries - she is distressed and demanding it be sorted.

'Shark broken, shark broken, shark broken' - she complains loudly in her strange monotone. Lucie clamps her ear phones tighter.

I immediately pray there are some batteries in the kitchen drawer otherwise she won't settle and a midnight trip to a late-opening garage awaits. Like I say, you can hate them. Hate them in that moment. They ask so much. So often.

But really you don't hate them.

This morning I am refreshed (batteries indeed there were) and you appear to be still in our bedroom! As the light streams in through the curtains and the hedgehogs sleep, you see me looking refreshed, ready for a new day. I look across at the still sleeping Lucie and smile, a smile all parents will recognise.

How can you not love them? For all the trials, the nail polish and exhaustion - we love them and are (no false sentiment here, we mean it), privileged to be their parents. They give us so much - just in different ways.

Not that I'd want it to be six weeks ago, mind you..........not for all the nail polish in China!

Thanks as always for reading.


Mark.

Camping!

Just a quick update on our camping trip with Lucie.  Despite it being her first time without the (in her mind) life support systems of wifi connection and TV, Lucie did good. We went to Kendal for a couple of nights and it was gorgeous. The weather was kind and the forest site, just the thing. Lots of hooting owls at night and in fairness to the Caravan Club, their pitches are always well spaced out. The Caravan Club are also of-course famed for their rather old fashioned values; a throw back to the 1950s, when gay was just something you where when the sun shone and sex hadn't been invented yet. Good thing they didn't spot our tent then. It was intended as a bedroom for me (Mimi is a two person only campervan), but failed because the airbed we brought wouldn't fit in it. My fault - obviously. The tent's outside is emblazoned with the words - FULLY ERECT - and well, see below... you get the idea! We hid it behind Mimi and just hoped no retired colonel passed by too close!

The first night was magical. As parents of autistic children, we always say we don't complain about the extra difficulties, its more those 'special moments' we miss which hurt - the passed driving tests, helping with homework, exam results, etc. But just every so often.......we are rewarded and the first night was lovely. We all went for a walk in the forest and afterwards Lucie giggled away in the campervan. Owls hooted for us and we sat outside with some wine until it got dark. Even being huddled together in Mimi was fine - yes it was cramped, but with all the windows open, sharing the summer night air and listening to forest sounds was divine. Okay - Helen went for the longest tiddle ever at about 3am, but I'm a Creative Writing tutor, I just thought of forest streams and indulged in the feel-good-Disney fest a little longer.

Day two was decent too - although the spell had been broken - probably by the shopping trip into Kendal. Nu-look isn't very 'Disney' - nor were the crowds. But at least we'd had a good time and will always have the memory of that special first night. This is all we ever ask really - just the odd 'moment'.

Lucie did enjoy herself, I am sure of that. But her summing up of the experience:

'Premier Inn next time dad!?'  Oh well - at least I won't have to hid my embarrassing erection.......!

Thanks for reading.

Stormy Seas

Well the fair weather and plain sailing of this holiday couldn't last forever and sure enough, after a lovely afternoon with friends on Wednesday, we came home to a message phone-message.

'Can you please call us at the Glen'

The Glen, of-course, is the respite-centre Lucie and Em go to one night a week. We always take our mobiles with us whenever the girls are there, but for some reason (lack of signal?), the message had not got through and it was with a sense of foreboding that we dialed the number.

As it turns out, our guess was correct, Lucie had had another epilepsy seizure and whilst we knew she had come round okay, the drive through rush hour traffic to get to her was pretty stressful. When your children are ill, you forget about respite-breaks and planned adult evenings - you just want to get to them. Long time since I've felt the tug of road rage, but I came close in the heat as I struggled through the roadworks, queues and other grumpy drivers. Oh for my own emergency siren! Finally though I arrived and the stress melted as I was able to give her a hug and re-assure her. The Glen staff are wonderful, as always, and had packed all her belongings ready to leave.

Today and after a good sleep, Lucie is back to her old self. But we are just so disappointed that after three very hopeful months without a seizure, the drugs she had been taking are no longer the miracle cure we hoped for. Maybe we knew this would happen, epilepsy is something you control, not cure, but Helen and I had just started to relax. We weren't racing out of our seats at every bump from upstairs, whilst Luce had stopped worrying about whether her 'legs were broken'. Poor girl; she makes sense of it all by thinking that if she falls over (during a fit) - it must be because her legs are faulty!

To make things harder, Emilie then returned this morning from the Glen and was extremely difficult. As her ranting upsets Lucie, I took Em for a walk round the village - but she absolutely howled. At any moment I expected arrest, we looked a dead ringer for one of those kidnap warning documentaries - 'shout, scream, kick, create as much noise as possible and bad man might run away'. This man felt like running, I can tell you!

This is not a picture of me!

But - as I type now, things are calmer. Em is playing and bouncing on her favourite armchair (the one with springs so destroyed, you need a stepladder to get out of it!) and Lucie is in her beloved summer-house. Tomorrow Em is back at the Glen (she visits one weekend in four) and the rest of us are going camping, trying our new awning out for the first time. Things can only get.......more complicated! But we've had a good run until today, so lots of energy left. :-)

Thanks for reading,



Mark

Epic Fail in Tesco

Sometimes dads are simply embarrassing, just ask Lucie.

This morning I took her to Tesco and whilst waiting at the check-out queue, I noticed that she was beginning to escape from her bra. A quick glance revealed nobody was looking, so I gave her straps a tentative yank.

'What you doing dad,' asked Lucie, attracting the casual attention of the young chap operating the till.

Blushing but determined to protect my daughter's modesty and noticing the 'problem' had not resolved, I gave her straps another healthy, upwards yank.

P'DOING!

You know that feeling when you can tell something has dropped out of your shopping bag? Well  - that was kind of what it was like. Whilst Lucie's chest was now safely lowered into the depths of her t-shirt, her bra had emerged round her neck!  Aaaargh!!

'Erm....silly, dad. Can you sort that, Lucie?' I squirmed, by now attracting something of an audience. Hunky checkout-guy tried not to grin.

'Dad rubbish with Lucie's bra.'  Giggled Luce.

'Thanks for that kid, maybe if you could just......' I made vague hand gestures towards her t-shirt.

Lucie did some discreet rummaging and soon was 're-fettled'. I meanwhile, was the same colour as the plums which were ringing through the till..............PING!

And so reader, I was perplexed!

Day ten of the summer holidays and I think I'm living in a parallel universe. Here, children are happy, hospitals are for other people and when you see water dripping through the ceiling, it really is your imagination!  Yes - the kids are being great!  It is like living in the last thirty minutes of Mary Poppins!

Lucie especially is flourishing. She is chatty, content and looks so healthy. She stood on the 'white square' this morning and is nicely continuing to lose weight too. We are also doing some educational stuff with her and have been amazed with the results - just ten days in and she can tell the time (okay - little hand only) and her handwriting has improved dramatically. Thank you Mary Poppins!

Emilie, meanwhile, is default setting Emilie; a bouncing (very bouncing!) ball of giggles and smiles. Bright eyed (she knows not of the demon Cotes Du Rhone) and wild haired, she visits us for food periodically and then disappears. Rather like the hedgehogs which are coming to our garden us each evening - except without the snuffling and worm eating.

So if, as Jane Eyre observed; life is indeed a lesson (actually I made that up, but its the sort of thing goody-two-shoes Jane would say), what are Helen and I to conclude?

For a while we've had a nagging doubt that the 'real Lucie' hides underneath her anxiety about school. Not that she hates it when she is there, but like a lot of autistic people, she struggles with the transition; the moving from the sphere of home to school. In addition, whist her teachers are wonderful, I think there is an element of Lucie steeling herself to get through the day. Like a soldier on the front line - she copes whilst there, but can fall apart after (and before she is sent back). The sobbing and (literal) trembling we see some mornings are very real and we have wondered what toll this takes on her physical health. This last year, she seems to have lurched from one illness to another.

 Of course taking her out of school would be a huge step to take. We are also aware that she needs social stimuli and a life which challenges her and prepares her for a time when we are no longer here (soon, the way I feel - got terminal man-flu!). But her life also should be about being as happy as she can be. So....

Anyway - we will continue to monitor, but in the meantime, we are enjoying this rather lovely universe of happy playing hedgehogs and snuffling children.....or is it the other way round. This flu weighs heavily on my fevered intellect!

Thanks for reading,


Mark.

Day One - kiddie wars begin

Well - day one of the holidays done. The kids have obviously decided to soften us up first with a few minor incidents. Like the mischievous ghost who  gently rattles his chain before putting his screaming head in your fridge, the girls know any trauma they inflict will be all the more fun if they can just put us on edge first. So what did they do?

Firstly Emi went for a solo walk down the cul-de-sac whilst mum and Lucie were out. Luckily I heard the front door click and caught her in time. Her grin told me this was only a diversion anyway - more was to come. Sure enough, despite hiding all our keys at bedtime behind a lockable door, evidence this morning showed she'd managed to find an old set we'd forgotten about. Fortunately, they were cut by someone who wanted to be a vet or an astronaut or something, anything but a key cutter. As such, they take the strength of Hercules to work and were found this morning sticking out of the front door.  Even then I still felt the urge to check the street for mayhem - next door have a nice new car, I could see that being a 'viable Emi target'. But no - not yet anyway.

Lucie, meanwhile, doesn't waste her time with thoughts of escape, why when there is fun to be had at home! It is slightly disconcerting to be sitting in the lounge, watching cricket, enjoying the sound of willow on leather, only to see a load of urine fly past the patio doors!  Yup - why go to the loo and risk bumping into your sister when the summer house bin makes such a lovely alternative. In fairness, she emptied it - opting for a medieval slopping out method - hence flying wee onto the patio. Luckily the cat has just moved from her sun basking......

So, there we go. Day two awaits. It is now 9:05am and I've already noticed our keys are missing. A search revealed them in Em's room. All keys are now behind a locked (combination) door. Mum and dad need to up their game!  More from the front .......soon!

Its only 47 days ..........

And here we are again, at the start line of another summer holiday marathon with the kids. Are we nervous? A little, last year Emilie was as difficult as she has ever been. At times she screamed (literally) for eight hours solid, day after day. But then, she was about to change school and we are pretty confident this time will be different. It is more that we are just a little wary, like a man patting a poodle a year after being savaged by a pitbull. Different time, different circumstances - but the echo of trauma still there!

But at the same time - the challenge also brings opportunity. Tied to the house means I can get all those DIY jobs done.  Or in my case attempt them, call the emergency services, then get father-in-law to put things right! But hey - even I should be able to paint the summer-house......maybe!

It will also be nice to spend time with the girls (did I say that?). We will have the time to experiment and try some new things with them; taking Em to ceramics painting, for example, Lucie to Bootham Crescent to watch York City (potentially child abuse that - but what the hell...)  It is also nice not having to see Lucie nervous about school or dragging her out bed at 6:30 for it (she needs an hour to choose which shoes to wear!).

So - off we go. As I type, Lucie is in the summer-house, Emilie avoiding. Her sister is strangely quiet - never a good sign - probably plotting! But will keep you updated, I suspect it won't be a dull ride.....  :-)