Uncoupling

D•dging The D•t

All those wonderful intoxicating reasons why we should be
Ambushed in ugly swollen-throated silence
Of gun-shot agony and sudden mind-shattering clarity
You are, really, going to walk away from this.

When did you stop looking at me the way I look at you?
When did you stop living and reliving how good it feels
To be inside me, every freaking moment distracted,
Every second apart feeling so hot, hungry, dirty-dog-desperate for more?

And I’ve been building you a palace in my heart,
To protect and to glorify you,
To comfort and to worship you,
To exalt and to honour you,
I don’t know what to do with all of that now.

I thought you knew, I thought the plans laid bare,
The foundations, testament to the power your hands have upon me,
The elevations, homage to the deity-sculpted beauty of your face,
The furnishings, all those tiny loving details designed…

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Uncoupling

Too Much Information

Written by Beatrix, aged 8.

To some of us autistic people it’s like a big dangerous world out there that we just don’t understand: having Asperger’s is like constantly having a heart attack that can’t kill you.

Walking into a room full of people is like trying to look into the sun.  I would just have to walk out, I wouldn’t be able to bear it.  Being in a busy place is really hard, I probably wouldn’t be able to cope, people are zooming fast and coming out at you all the time.  I have to try to keep myself hidden.

I don’t like to be looked at a lot of the time, for me that feels like it’s rude.  I like to be hidden because I feel like lots of people stare at me and it makes me feel worried.

If there is a loud noise, it feels like a big boom that can kill you.  I also don’t like super-quiet noises because it feels like a really terrible thing, it tickles in an unpleasant way.  I’ve super-sensitive hearing so when there are tannoy-type announcements (at the supermarket or at the train station), it is really scary and hurts my ears.  I am always very scared that a fire alarm or a siren might go off.

When people touch me, it feels like a spider or something else that you are absolutely afraid of and it makes you go crazy, it’s just a horrible, horrible feeling and people need to respect that and it’s one of the things that they don’t.  They think I’m the mean one.  I can’t go into a lot of shops and restaurants because they smell too strong and because the waiters and assistants come up too close so I don’t want to look at them but I know they think I’m rude so I have to try and suffer it.

If there’s a weird texture it can make me feel sick or crazy, it can make me do something that wouldn’t be “normal” like wriggling my arms or jerking about because it makes me feel like I need to make my actual bones shake, to get air onto me, and to get rid of the bad feeling as quickly as I can.  Sometimes I have to scratch feelings off my skin.  I can see how things feel, it sounds crazy but it’s true.  For example, I don’t like carrier bags for how they feel so I can’t even see one without feeling sick and angry.

Sometimes if there are too many things going on at once I can feel crazy and act mad like a dog or a cat or something… I can make noises to make myself feel better as I feel more in control but that makes people look at me and that makes me feel worse.

For me, a surprise can make me rage.  Even tiny things can make me really badly cry.  Sometimes I feel like my body has a mind of its own.  Something happening suddenly that I can’t immediately explain can make me run away, even if I might be putting myself in danger.  If I have been out somewhere, I might need to spend a couple of days in bed to try and recover and get my sensories under control.

Some people think that because some autistic people don’t wear clothes, or wear ear defenders, they think it’s rude or annoying and bad and think we’re bad people or we have bad parents but that’s just not true.  For example, I like to stick my tongue out because it feels really good, I’m not being rude.

BUT IT’S NOT A THING THAT NEEDS TO BE FIXED, NO ONE SHOULD BE ASHAMED OF ME OR ANYONE LIKE ME, I’M JUST ME.

Too Much Information

I Stand Quietly

I stand quietly while you do somersaults on the bed as you aren’t being naughty, you are just trying to get your out of sync body under control.

I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.

I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.

I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.

I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer noise is too overwhelming for you.

I stand quietly while the nice old lady who lives over the street tells me you wouldn’t be like this if you had siblings.

I stand quietly watching the part-cooked dinner flush down the toilet as the smell was becoming too strong for you to bear.

I stand quietly as you diligently brush your teeth even though it feels like the toothpaste is burning you.

I sit quietly while you scream at me, trying to control the panic you feel because I gently touched your head when brushing your hair.

I sit quietly while the teacher tells me she knows about autism and that you are not autistic and asks if I would benefit from some parenting classes.

I sit quietly while the GP, the occupational therapist and the paediatrician agree how bad it is but say that there are no resources to support us further.

I sit quietly while you cry because your friends say you can’t play with them any more because you tried to change the rules once too often, even though it was only so you could cope.

I sit quietly watching you desperately try on countless items of clothing, searching your cupboards, feeling the textures, knowing that we will have to cancel your beloved horse riding lesson again because they all feel too bad to wear.

I sit quietly as you explain to me that you can go to no more birthday parties and no more clubs as people are just too scary when they are excited.

I sit quietly when my family tell me that you will grow out of it, you just need more routine and earlier bed times.

I sit quietly and rack my brains for something for you to eat as everything you try today makes you gag and wretch until your eyes stream with tears.

I sit quietly when an old friend suggests I would be better off putting you on the naughty step and taking away a beloved toy.

I sit quietly all night whilst you sleep on the cold wooden floor with your head on my leg as you are really poorly but the warm softness of the bed that should be a comfort is making you feel worse.

I sit quietly while you try to regain some kind of control over your body in a meltdown, scared and sobbing and writhing about, hitting yourself harder and harder and begging me to hit you as hard as I can too.

I lay quietly with my back to you as my smell makes you feel sick and although we both desperately want and need to cuddle, you can’t bear to.

I lay quietly beside you when you tell me that you are the wrong sort of special and the wrong sort of different and you want to die.

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Thank you to everyone who has shared their love, support and personal experiences in response to the poem.  I am forever changed by the magical rollercoaster ride on which this poem has taken me…

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From March 2015:

It is one month until World Autism Awareness Week, so last night, rather than sit quietly googling for answers as I normally do, I wrote this open letter to share on social media.  I wonder how many times people could ‘Like’ and ‘Share’ and ‘Tweet’ this over the next month?  #istandquietly

I have had to learn to do these things quietly because my daughter needs me to.  She is seven; bright, super funny, articulate, thoughtful and loving.  She also has autism spectrum disorder.  If you saw her on a good day, you’d maybe think she was a little shy and kooky.  You’d maybe wonder why I am letting her wear flip-flops in the winter rain.  You’ll never see her on a bad day as she can’t leave the house.

She has severe sensory processing difficulties.  A normal day exhausts her and when she feels overwhelmed, even a gentle voice trying to soothe her with loving words can be too much to process, making her feel crazy.  She describes walking into a room of people as “like staring at the sun”. She’s incredibly empathetic but you may not realise as she feels her own and others’ emotions so deeply she can’t bear it, and so sometimes she has to just shut down.  Forget about a hug.  She is also desperately trying to come to terms with having a hidden disability that few people can understand.

This is just one story among thousands of different stories of autism, not everyone is like Rainman or like my daughter.  I know it’s no great piece of prose but it’s from the heart.

Thanks for reading.

Other useful links:

 

 

 

I Stand Quietly