Saturday, 12 March 2011

The woman on the pier

Just after Emily was diagnosed with autism and learning difficulties we took a day trip to the sea side. Llandudno to be exact.

It was a beautiful day and Emily had always loved the sea so aside from the usual stop because of Liz being travel sick things had gone well.

The diagnosis was still very raw. Phil had retreated into work to help him through and I was spending every minute scanning the internet for causes, treatments, therapies and trying to dodge the usual ‘cure” sites.

We headed to the pier because of the many autism friendly attractions. Lights, sounds, repetitive machines and rides.

Emily was ok but after many many turns feeding money into the fruit machine we drew the line and the predictable meltdown happened.

She was three and the full throttle screaming kicking and rolling on the floor drew many stares and comments. One woman in particular watched rather than stared though and as I tried to comfort Emily as Phil distracted an embarrassed Lizzy. She waited.

Eventually Emily was calm enough to bring back with a packet of Quavers and we put her on a ride with her sister.

The woman walked over. I smiled and offered my usual(in those days) apology.

“Don’t worry’ she said. “it’s autism isn’t it?”.  Surprised I said yes it was and explained that Emily was just diagnosed.

“I recognised it straight away” she said “Mine’s grown up now but he was the same”

I was so pleased she was the first parent I had met since the diagnosis and I felt such a surge of relief.

“It’s not easy is it “I said.

“Not very no. wait till she  asks you what’s wrong with her and why she’s not like everyone else. That’s when it’s really tough. Mine pushed me down the stairs”

I didn’t know what to say. She didn’t say anything either so we just stood together in silence and watched Emily on the ride still sniffing a little from the meltdown.

 I looked at Lizzy at 6 fiercely bright and independent and 5 years away from her own diagnosis of Asperger’s Syndrome.

Then the woman smiled and walked away.

Over the years I’ve thought about that woman from time to time. Mainly in those early years in terms of making sure I never treat a parent of a newly diagnosed child in an insensitive way, as it felt at the time. Mainly as Emily has grown bigger and stronger, if the day might come when the violence becomes to much to bear. 

 As I write this I’m nursing a shoulder still painful from being repeatedly and unexpectedly punched this afternoon.  A meltdown so prolonged and frightening that we have had to access an emergency bed for the second time in a month.

We are lucky we still have respite available.

 It doesn’t take away the heart punching pain I feel at being unable to reach her and take her pain away. It doesn’t lessen my fear of what this world can and does do to disabled people like Emily when vulnerability makes them easy prey.

But it offers a time to recharge our batteries and attempt to disperse a little adrenalin.

It’s not her fault it’s just another phase of the spectrum.  She doesn’t want to act this way any more than we want her too. The battle that rages still within Emily’s brain, that dictates her actions is fuelled by fears of unknown cause.

It flashes so quickly now that there isn’t always a logical path to it’s genesis. No discernable trigger. When she punched me in the back this afternoon she hadn’t even seemed angry.

If she had, then standing so close to the top of the stairs as I was, I wouldn’t have turned away.

Tonight the woman on the pier is front and centre of my thinking.