Monday Morning 6am

Clock says it is morning, but as I type this it is dark outside and the cat hasn't deemed it sufficiently a.m. yet to demand her food. So night it remains!

A tough night too - Lucie very upset and unsettled, meaning she needed to share our bed with Helen - I got Lucie's place in bed with Pixie Lott and Microwave Rabbit (don't ask).
At 4am, Emilie crashed in demanding 'batteries', which was something of a nerve jangler. Her recording shark had wimped out in the night and lost all the recordings she had made during the day. Batteries were therefore found, computers switched on and the recordings replaced. Only in this household is a shark recording of 'Jingle Bells' required before sleep can be attained. Especially in September!

Today - when it bothers to get light - is going to be something of a critical day. After consultation with school and Lucie's psychologist, we have (reluctantly) agreed to play it tough and try and get Lucie back into class on a more regular basis. You may be able to help us here, see if you can come up with a reason for this little problem:
Lucie trembles, vomits and cries at the thought of school, but when she is there, seems to enjoy it. If she hated it, life would be simple, a new school or even home tutoring. But that isn't how it is and she cannot tell us what troubles her. To us, Lucie going only three days a week would seem a sensible solution, in the short term at least. Her anxiety would be reduced and she would have some quality time with us, away from her sister. But in this tick box world, it would appear that such a compromise is not to be; the authorities are set against it. All or nothing it seems to be.
So in about two hours time, we will attempt to propel a trembling child to school who has barely slept and is losing weight through being too nervous to eat. As a parent, this is going to be a tough ask, but maybe we are overprotective. It doesn't feel that way, but maybe?

Something does need to change though. Last Wednesday Helen went for a short stroll and texted from it to say she didn't feel she could come back for 24hrs. She needed a break. Of course she did return, within the hour, but for someone who hasn't flinched once in the last fourteen years of parenting our children, the act said it all.

Whatever this week of 'tough-love' with the school situation brings, I hope that it is conclusive one way or another, because Lucie has not been happy at this institution (or with the thought of going) for the last three years. The stress has worn her down and physically she has suffered too with repeated water infections, chicken pox (which became infected) and numerous other minor ailments. Her epilepsy is also aggravated by feeling tired, of-course.

So, let us hope for some answers and maybe some clear signs that things have to change. As most parents will tell you - we would do anything for our children - which is why not knowing what 'anything' is, is so hard. Wish us luck for the week ahead.

Thanks for reading,


Mark

S.O.S.

It is funny how you know the precise moment when you can't cope any more. I mean really can't cope.

Over the last fourteen years things have been pretty torrid on numerous occasions; the poo-smearing, tantrums, Emilie's screaming sessions during last year's summer holidays, which could last a full eight hours at a time. But we have always felt we could cope. We've also recognised that it is never a single incident which makes caring so difficult, it is the accumulation over the years. We have not been abroad for over a decade, or really ever had a relaxing holiday in that time - taking two autistic children away from familiar surroundings is always an adventure rather than a break! We've always felt in control though - able to see a future where we continue to look after our girls into adulthood.

Today though is our first real SOS. Our first doubt.

Everything seems to have broken down. Lucie vomits and sobs at the thought of school, we think because her sister is there and she needs the break from her. So school, one of our survival blocks, is starting to crumble. Lucie feels the same way about the Glen (respite) too - another block crumbling.
Emilie for all her boisterous, bed-breaking bouncing and her shouting, is generally a happy child. Another block - she is far from happy at the moment - she is in distress.

For some reason Em has reacted to the return to school and the screaming sessions of last year have returned. Last night she shouted into the early hours, Lucie trembling in our room, trying to sleep with her industrial earphones (seriously) clamped to her head. Emilie crashing into our door, Helen and I jumping as though electrocuted - nerves so on edge. Nobody slept much.

Same again this morning, no school for Lucie - Emilie shouting in the street whilst waiting for her school transport. Sitting on the cold pavement, refusing to move. Screaming and shouting.

When her sister had finally been calmed and coaxed into the taxi, I took Lucie for our customary walk to the local village shop. Normally I enjoy this, but when stressed, somehow it can put years on me.

scrape.....scrape.....scrape

That is the sound of Lucie's shoes next me as we walk - somehow they encapsulate all that is difficult about autism and the sound cuts right through to the nerve. At the moment, she will only walk in a certain pair of Ugg boots, despite having some lovely pairs of boots and shoes to choose from. The scraping is her walking on the sides of her boots, not the soles. The material chaffs against the rough pavement, tearing slowly at the material. Lucie has flat feet and her dyspraxia means she walks on the sides of her feet. She has specially made insoles, they won't fit the Ugg books. Hence;

Scrape.......scrape......scrape. I try to think calm thoughts and breath slowly.

A man I recognise from the village stares as we exit the shop, his shocked look turning into an embarrassed smile as he catches my eye. Normally people staring bothers me not one iota, I'm proud of my girls and love them. It bothers me not today, to be honest. But the scraping does.

Scrape....scrape....scrape.

In the corner of my eye I can see Lucie's hands making the claw like movements which herald a potential tantrum. I'm too tired for this. My hands clench the bag I'm carrying, jaw tightens. I dare a proper glance and see she is smiling.

Phew. Odd though, claw-hands usually means impending meltdown, but I push the thought away.

Scrape....scrape.....scrape...

I quicken my pace. I want to walk away from all this and just relax. Just not to have to care, for a while. Maybe just half a day. The scraping recedes as Lucie gets left behind and I feel awful, stopping, putting on a friendly voice;

'Come on Lucie, keep up, nearly there, sweetie.'

She can't hear me of-course, she plugs herself into her ipod for these walks nowadays, but she can tell I am encouraging her.  I walk on, gritting my teeth against the scrapes and then suddenly picture myself, how I must look. A middle-aged man with hair unbrushed, shoulders slumped forwards, looking at the ground, trudging along like a victim on the march to Dachau. It comes to me in a flash:

The man wasn't just staring at my daughter, he was looking at us both. The autistic daughter and the broken man.

Whilst I have been typing this, a couple of paragraphs back if you want to know, Lucie started sobbing and howling upstairs. It could be anything, but it could also be that she did indeed intuit my mood on the walk and this is backlash. The clawed-hands, usually a sign. A lot of autistic people struggle to recognise human emotions and feelings in others, but Lucie has always been tuned in. I feel awful - I should have tried harder.

Whilst I've been at the shop with Lucie, Helen has emailed school, our social worker, respite and the children's psychologist. After fourteen years of coping, we've had to admit that we can't. Not today anyway. We have a meeting with all parties at 4:30 today - so that is something, although part of me just wants to curl up and sleep. I'll be honest, part of me also hates asking for help.

I don't mean this to sound melodramatic, I am sure we are just in post-summer holiday crisis, when our reserves aren't coping with a new crisis. I am sure we will overcome this hiccup and we may even get some extra help. So please don't gush sympathy, or tell us how well we are doing. It is merely I want to keep this blog as an accurate reflection of a year in the life of parenting our two gorgeous but challenging children. So, I must do that, warts, scrapes and all. Trust me - this blog will be funny again next week...for that is how life goes. Ups and downs - we are no different from the rest of you - despite the stares!

Thanks as always for reading.


Mark

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.