Saturday, 28 May 2011

Party Time

Last night was on the scale of bad nights one of the worst.

Emmy wanted to go to Sainsbury’s.She had carefully written out her list and waited for Friday- counting down the nights before she went.

She chose what she wanted to wear and had her hair washed so she had demonstrated a good level of compliance.

Everything was ok until we got to the party stand.

In our house as I mentioned before , we’re not what you could call party animals.
When you have a child with Autism, friends are not part of their picture. They are crucial, they are wanted but they’re not usually there.

The challenges of befriending someone with a learning disability or poor communication skills are huge. Aside from the lack of interaction and propensity to dominate with obsessions and interests, the sheer “weirdness” is too much for many people.

Children though accepting of learning disability and all differences when young, begin at about eight, to look for conformity. They want someone who mirrors their thoughts feelings and interests and their patience of a perpetual child amongst their peers means that they naturally move away.

Emily however likes a party and she likes people. She is entirely unaware that few people like her.

Adults will treat her with kindness and understanding up to a point, as will well brought up children of some of the people we know. However the heart choking sadness of my child filling the trolley for a party that will never come was, for some reason yesterday, unbearable.

So after the paper plates and cups and tablecloth and candles and napkins and balloons, I called time and moved things along.

This was a mistake.

Emily became angry and as we progressed through the supermarket explosive. She began punching me and shoving and pushed me over several times.

The floors are slippy and the surfaces hard and I was not winning the battle.

This was one of the worst meltdowns I’d seen with Emmy and definitely the worst that has ever happened in public.

I knew I had to phone Phil but there is no signal inside the shop so I had to get to the entrance. Deviating from the routine of the normal route caused Emily’s fear to exacerbate her rage.  Now she was dangerous.

As she punched and screamed and pulled me I was acutely aware of something really horrible happening around me.

People were retreating to a safe distance, so that they could watch.

We passed members of staff much of it happening in front of the customer services desk yet no-one spoke to us. They just watched.

Why? Maybe like a car crash, maybe like a bad soap opera or a good soap opera.
When did we become so anaethetised to suffering going on around us that when let it pass unchecked?

Phil eventually arrived and he sent me outside. He carried on with Emily and I sat smoking a cigarette with some girls on a bench. I cried they chatted. They gave me light for my cigarette so they weren’t unkind, just uninvolved.

Then I heard Emily shouting and found the two of them. Phil had tried to impose restricions and Emily had reacted the same way. As I tried to calm things she gave me a shove which landed me in a line of trolleys being pushed by a member of staff. Again bizarrely to me, he said nothing just stared.

I want to be able to tell you that we gained control of the situation. That we refused Emily’s demands, that she was marched to the car, taken home and put to bed.

No. This is a child, a young woman for whom those days are a distant memory.

So we turned around and went back in.

A text book fail on our part. We rewarded the “bad behaviour”. We could have dragged her to one of our cars, struggled to get her in, then either Phil  or I could have been attacked while driving and crashed the car.  So we did the only thing we could.

We followed the normal route and she took us back to the party stand. Emmy filled the trolley with party bags and trinkets and wrapping paper for the party.

Like a new millenium take on Miss Haversham’s wedding breakfast our dining room table is now laid out to receive guests who will never come.

At least not willingly and as we all know nobody wants guests who would really rather be somewhere else.

Phil and I are bruised and sad and exhausted but otherwise ok. Our criteria for ok these days, is pretty low. I’ll repeat my mantra now because It’s what I believe. Our suffering as carers is as nothing to Emily’s and many millions of disabled people.

It is the torment that plagues Emily, that manifests itself so unexpectedly and now so publicly- that’s what really hurts.




6 comments:

  1. I really hope you both are ok. Your reactions to something that would have driven most people to do goodness knows what are truly special. Anyone who reads this post will see straight away that you are not only the parents of a special child, but you're also very special people. For that reason anyone would be lucky to have you as friends. Your friendship is their loss if they can't see that.

    I have an idea for you- does Emily have dolls or teddies? Why not have a party for them and the 4 of you? That way her party stuff gets used, and you all have a bit of fun.

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  2. Thank you so much for your lovely comment. Also thank you for encouraging me to blog. It's very cathartic in tough times. You are a lovely supportive person. Nik xx

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  3. Hey,

    I don't know you, but I have to agree with samedifference1 above:

    "Anyone who reads this post will see straight away that you are not only the parents of a special child, but you're also very special people."

    I wish you all the best.

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  4. Thank you so much that's really lovely to read. Love nik xx

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  5. Thank you for this post. It could have been me in that supermarket my 7 year old is - I sense - coming to the end of the 'marching to the car and being taken home to bed' phase. I take hope from your story - not from the people who stood and watched, I have seen that many times - but from the reactions of you and your husband. If you can cope then so can I. Thank you for sharing your strengh. My son and I need friends like you. x

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  6. You brought tears to my eyes. My 5 year old son is 'normal' (is anyone really normal?) and it breaks my heart if any of his friends don't like him one day. The idea of him planning for a party no one will attend...well, I can 't empathise but I can sympathise. I can't imagine the raised hope and disappointment for your daughter. It must be so hard when you can't actually physically restrain her own children and stop them from hurting you or themselves. I salute you and your husband. I'm a stand up as well - hope to see you on the circuit :)

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