Tuesday, 21 January 2014

Caring, comedy and me

When you’re a carer your life is no longer your own through necessity.
As a sandwich carer for my mum and my two daughters for twenty years I understand this well.

Emily who is now 16 was diagnosed with learning disability and autism at three years old and with epilepsy at ten. Lizzy who is 19 was diagnosed with Asperger’s syndrome at ten and in between my mum was diagnosed with Alzheimer's disease at 68.

Being primary carer for them all filled my days and nights.

Life as a carer can be extraordinarily challenging but humour has always been crucial for us here, in terms of getting us through.

As I detail in my stand up, the humour comes from the world misunderstanding or expecting the girls to work to nonsensical rules like queueing. 
When you take social rules for granted it’s difficult to imagine how ridiculous they are for many on the Autistic Spectrum who don’t.
Taking Emily to the cinema for the first time at 4, involved walking in, buying the tickets, walking to the door of the auditorium, her seeing countless rows of people in the dark staring at the light like automatons and then her turning around and walking out.

Quite sensible really, if you haven’t a clue why you’re there in the first place.

Other people’s reactions are also funny. 
You never understand the reach of the film Rainman until you share with friends and family that your child has been diagnosed with autism.

“So what’s her thing” is a question I was asked a lot post diagnosis.

“Her thing?”

“Yes you know can she draw Westminster Abbey in perfect detail from a photo she’s seen only once or is she any good on the piano, or um…does she know the timetable of planes…or..”

“Well she can scream for 8 hours without stopping…but I don’t think that makes her Mozart”

Savant ability as demonstrated in Rainman accounting for his unique and multiple skills, only exists in a tiny percentage of those children and adults on the autistic spectrum worldwide. But it’s a thing now that people hold onto often when they don’t know what to say. It’s a great film and in the days before autism entered my life one which I also embraced as a definitive explanation of a condition I didn’t understand either.

After Emily was diagnosed I read everything I could.

I tried to take on board the advice in how to manage meltdowns. For those who don’t know a meltdown it’s very similar to a toddler tantrum rather like the depth and length of a Siberian winter is rather similar to the first dusting of a UK winter snowfall.

I read up on how to manage them and tried a time out approach in trying to make it clear to Emily that two bags of crisps were not an option.

I used the word no. No isn’t a great word for people with communication problems. Emily was at this time almost exclusively selectively mute. So her response to No as a word without negotiation was to take a deep breath and start screaming.

I was resolute to attempt time out. It worked apparently. Everyone with neurotypical children told me it worked and at that time I didn’t know anyone with learning disabled children.

So I tried it.

This involved me carrying Emily to the dining room as she was still small enough to carry at this stage and then I stood on the other side of the closed door.

Wrong footed momentarily. Emily was silent. Then she began hurtling herself at the door. I held it firm.

Then I tried to remember what the advice was. ….Bang bang bang…Emily was making the door frame shake .

In theory a time out meant a minute of placement of the child, away from the object that they want with the length of time to be equivalent to the child’s age. ….bang bang bang…..Emily was four so four minutes?… Bang Bang Bang…….I was struggling to hold the door now.

“No wait hang on she has an developmental delay of two years so ….so should I adjust the time accordingly to two minutes?”…..Bang bang bang…..I was trying to work out the time/timeout/age/developmental delay ratio when I noticed Emily red faced and sweating walk past me on her way to the television eating the bag of crisps.

She’d given up pounding on the door when she’d spotted that the patio doors in the dining room were unlocked and so she exited via the garden and back through into the kitchen.

I decided timeouts weren’t for us.

I spent my days in meetings about the girls or appointments, or trying to sort things at school or giving mum her medication or taking her to appointments or doing her shopping and her cleaning, cooking her meals then the school run and home.

At night after caring duties were completed usually about 10.30pm on a good night and much later on a bad one and in the three hours before Emily would wake up, I'd write. After a few years I'd written, a screenplay, two TV comedy dramas and a sitcom pilot. I've also nearly finished a comic novel.

Mum had moved to a nursing home as her condition intensified and just before her 78th birthday, after a decade of living with Alzheimer's she died. She was one of the most extraordinary, beautiful people I'd ever known.

So my life changed again and the girls were growing up and their needs were changing.
The challenges of raising a child with Emily’s level of need intensified when she hit puberty.

A neurotypical teenager will shout, stomp out of the house and moan to their friends.
When you have a learning disability this isn’t always an option and so the raging hormones and need to detach are compounded by a need to be cared for.

In Emily’s case her challenging behaviours, which manifested as violence, became unmanageable for her and dangerous for us and we reached a critical point where her living in an assisted placement became urgent.

It was the right decision and it was the only decision and in reality should have been one we made years ago.

She is now accessing life in a way we had so hoped for and compared to her refusal of school, respite and to even leave the house in the three years before she left, to her being happy and fulfilled now, makes it a joy to witness.

Because she is thriving and achieving and embracing life now in a way, which makes me know that the most difficult thing I've ever had to do as her mum, has been absolutely the right thing for her.

On her 15th birthday at home she had a birthday cake, a bouncy castle, but no guests.

On her 16th birthday in her new residential school, she was dancing with a boy.

Once Emily was settled I was able to think about what this seismic life change meant for all of us. My husband Phil has his career, and Lizzy though still needing us, is realising a level of independence, which means my caring duties for her are also reducing.

At 47 changing your life at all is daunting but my choosing to pursue creativity in one of the most difficulties arenas for expression of ideas, was a seductive notion to me.

Creativity had always been a feature in my life. I’d graduated from drama school in 1989 and hoped to go back into acting when the girls were older. However their needs and those of my mum had led me to shelve my creative ambitions I thought permanently.

The beauty of stand up is that it is open to anyone. It’s not age specific it only has one criteria- be funny. It brings together writing performance and ideas in an accessible way.

But considering doing stand up was a double-edged sword of anxiety.

The notoriety of raucous comedy clubs and merciless hecklers was daunting. I was consumed with worry whether my stories are too niche and my experience too specific for audiences to relate to.

Everyone started somewhere and everyone knows the agony and the ecstasy of creative endeavour whether to world acclaim or the book you write at night in secret, when your normal working day is over.

It took me a while to look for my first open mic spot. I know what that means now,I didn’t then.

Simply put it’s an opportunity for unknown acts to get up and try out their stuff. I booked it a couple of months in advance then sat down rewrote everything over and over again until I felt happy.

 Standing up to talk for the first time was frankly terrifying.

I didn't think I could get to my feet when the MC called my name but I did and halfway through I knew that this was something I'd keep being terrified of and keep doing. The crowd in the club were amazing and so supportive and crucially they laughed when I hoped they would.

I’m at such an early stage with only four gigs completed and it will be a while before I’ll know whether I’m any good or not, but the immediacy of knowing whether you’re funny or not, because the laugh comes or it doesn’t, makes you want to learn as much as you can as fast as you can. This only comes from a lot of stage time.

I try and give an honest account of caring whilst totally respecting the crucial role that carers play in society, and those I love who it’s been a privilege to care for.

I’m mindful too that we are living through unprecedented times of societal change in attitudes towards disabled people.

I feel there is room for all voices really and I’m loving every minute of finding out.

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