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