Thursday 18 November 2010

Autistic with spoons

Autistic with spoons? Autism and spoons? Here’s my attempt at a variation on the spoon theory.

We all have spoons. There are no stereotypes for spoons. Everyone’s spoons are different, everyone has a different numbers of spoons which fluxuate. Everyone uses their spoons in different ways. And maybe your spoons don’t even look like spoons!

I think I know my own spoons quite well, I have learnt to recognise (and respect) them as I have become older. Some spoons I can hide. C seems to know when I have lost a few spoons!

And C’s spoons from motherly intuition and my perception of them over many years I have some sort of idea. But I have no idea how many C has at any one time. He has ones for many more things than I do - noise, light, colour, smell, sharing personal space, things around him, movements, processing, feelings, thoughts, communicating, bodily functions, positions, health, head banging, keeping clothes on, standing up, rocking, flicking, eye poking - and many many others I just have no clue to. Nor no clue as to how they really affect him. Before during and after juggling.

Some days C is better at juggling his spoons than others.

Some days he may have woken up with fewer or more spoons than usual?

Some days some spoons maybe bigger than shovels and C is intensely aware of spoons that he can usually ignore.

Social interactions for C uses up lots of spoons so he very rarely does it and then only if he has spoons in abundance. Making him ‘appear’ severely socially isolated.

C’s spoons do not conform to many NT spoon rules. C’s spoons can be extreme - obvious or invisible. C’s spoons like to keep me on my toes :)

Some days C drops his spoons one by one – if I have been watching closely I can see this happening and sometimes I can distract him, divert him or remove him where possible before he loses too many.

We have both learnt different tactics for clutching on to the few remaining spoons. C learnt to put his fingers in his ears, to hum, to rock, to focus on an object (used to be a chopstick now it’s his thumb nail).

I have learnt where to position him, distract him with my predictable movements or by mirroring him, using behaviours he recognises, or maybe playful ‘ritualised exchanges’ like I kiss him on the nose with my finger. This seems to sometimes ground him (if he hasn’t lost too many spoons by then) or my making happy sounds that he makes. Looking deep in his eyes - Positive and reassuring. Etc

But if C didn’t drop them one by one, if all his spoons just spectacularly crashed and there is nothing he or I can do and he over loads, melts down, fragments – whatever you like to call it. All I can do to help him is to get him to a safe quiet place to recharge/process/pick up some of his spoons.

And I do the same as I also will have lost a few by then.

On reflection there is always something to learn, something I may have missed. And so the next time I try something slightly different (yet familiar and recognisable). We have built on this and evolved our routines opening up C’s world. I learnt to read the function of some of C’s spoons by being sensitive, mindful, watching and listening. It’s been hard work and some things have taken years - but C’s arsenal of spoons that he can juggle is growing and changing all the time - it has been so worth it and now we can go just about anywhere. And try anything.

We have a connection. He trusts me even when I get it wrong sometimes and drop the odd spoon.

Saturday 20 December 2008

Night to remember

The music throbbed.
The lights flashed
The dance floor was heaving.
I scanned the room and then I saw him.
The most handsome man there.
Our eyes met only briefly but his radiant smile remained as I walked towards him.
I danced his dance.
We stimmed we rocked.
I squeaked with his squeaks.
He held my hand HE HELD MY HAND!!!
I felt we were the only two people there. Worries forgotten as we lived in the moment.

I felt connected.

The evening was then cut short as Cs staff had to take him back (end of shift). But it was a magical night, Cs night club debut, one I will remember for a long time.

No fingers in ears!!

Cs first taste of alcohol!

Did i mention he held my hand!!!

He was fasinated by the smoke!

Merry Christmas Everyone!

Thursday 14 August 2008

What matters..

There are many myths and theories surrounding autism.
Autism has been around longer that it has had a name and much longer than many of the theories below were even invented.
Here's a light hearted collection of some of the theories that are around.

Did I shampoo our dog?!
Or was I specially chosen by god?

When pregnant was I stressed?
Or did the devil my son possess.?!

Is C the next stage of evolution?
In the air was there pollution?

Did I conceive in late spring?
Do I remember if it was raining?!

Is C a crystal child waiting to ascend?
Or is he one of the mutant X-Men?

Was it the dental fillings I had?
Or the triple vaccine MMR jab?

Was it my lipstick that was red?!
Or the mobile phone near my head?

Could it be a food allergy?
Or my disordered personality?!

Was it the smoking and drinking which was bad?
Or C having an older dad?

Was I a cold refrigerator mom?
Who always had the TV on?

Or does C have an extreme male brain?
Many things that would explain!

C wasn’t held to ransom,
Nor is he a victim or a madman.

Words hit like a fist - like Retard
Or he’s a brat whom I didn’t spank hard.

It doesn’t matter to me what was the cause
Or the whys and wherefores.

As if you look at my family tree
Its more than plane to see!

What matters is the here and now,
Not the why, not the how.

Autism has made C who he is today -
I wouldn’t have him any other way.

I support C and help him as best I can.
I love him for who he is. C a wonderful young man.

Tuesday 8 April 2008

Films related to Autism

Even if you don't know very much about autism I'm sure you will have seen or heard of a few of these.
Please let me know the ones i have missed.

1962 - To kill a Mockingbird
1963 - A child is waiting
1969 - Change of Habit,
           Run Wild Run Free
1972 - A day in the death of Joe Egg,
           Brother Carl
1974 - Silence
1977 - A Circle of Children,
1978 - Lovey: A Circle of Children Part 2,
1979 - Being There,
            Son-Rise: A Miracle of Love,
1980 - Touched by Love,
1981 - The Pit
1986 - The Boy Who Could Fly,
            Childs Cry
1988 - Rain Man
1989 - The Wizard
1990 - Backstreet Dreams
           When you remember me
1991 - Little Man Tate
1993 - Family Pictures,
           What's Eating Gilbert Grape?
           House of Cards
           When the Bough Breaks
           Thirty Two short films about Glenn Gould1994 - Silent Fall
           Forrest Gump
           David's Mother
           The Innocent
1994 - Relative Fear
           Touch of Truth
1995 - Under the Piano
           Silence of Adultery
1996 - The Boys Next door
1997 - Journey of the Heart
1998 - I Am Sam
           Mercury Rising
           Down in the Delta
           Spoonface Steinberg
           Little Voice
           When the Bough Breaks II
           Perfect Prey
           Nightworld: Lost Souls
1999 - Molly
           The Other Sister
2000 - Dancer in the dark
2004 - Miracle Run
           Killer Diller
2005 - Mozart and the whale
           Magnificant 7
2006 - Snow Cake
2007 - Her Name is Sabine
           Yellow Brick Road
2008 - The Black Balloon
            Autism: The Musical
            Tropic Thunder (A nationwide boycott of this film is being called because of the movie’s open ridicule of people with learning disabilities.)
            : Just Add Water
             Treasure Diversity
             If you could say it in words
2009 - Adam
           Mary and Max
           City Rats
           Nobody Nowhere Donna Williams In development
            The horse boy
2010My name is Khan
            Dear John
            Temple Grandin
            A Mothers courage
           Ocean Heaven
           Wretches & Jabberers
           Dad's in Heaven with Nixon
            Quantum Apocalypse
2011   Loving Lampposts
2012   White Frog
           Extremely Loud and Incredibly Close

Thursday 6 March 2008

Star trek the future?

Casdoks log supplemental

With advancements in technology the inspirations on Star Trek may one day become reality. And just think what difference it could make to our children

Hypo Spray, a needless injection. C cant have any injections as its just too difficult and dangerous. This would be make such a difference. And if they could take blood samples this way to.....

Tricorders. Wouldn’t this make life so much simple to just be able to scan our children to find out what was ailing them. This would have saved C so much trauma.

Universal Translator. Wonder if this could be used in Review meetings so I knew what they were really trying to say!
As C doesn’t speak to decipher his high pitched squeals and other noises would be wonderful (or would it??!)

Cloaking Device, now this could be useful. I will let your imagination run with this one!

Food Replicator No more cooking or shopping in supermarkets!

Transporter. How useful would this be?! No more waiting in traffic jams, queuing for public transport. Getting your child into the bathroom! Etc

I'm sure a few of these are only a matter of time.

I was given this beautifully hand crafted 'Quick Wit' award along with Maddy by Angela from Memoirs of a Chaotic Mommy for making her laugh (and cry) Angela has asked me to pass it on to 5 people who make me laugh.
Many blogs have made me laugh and cry so not an easy choice, but i would like to pass this award onto; Magneto Bold Too!" A dust bunny in the wind, Ramblings Of A Madman, Fullofbullshite and mother's pride. Hope you enjoy!

Wednesday 6 February 2008

Happy Birthday Lego!

Happy Birthday Lego!

Lego was 50 years old last month!

I dont live far from Legoland, i certainly recomend it (bit pricey though!)

There are amazing things that people have biult out of lego.



Lots of Star Trek things

A Computer

A lie detector !

And even Steven Hawkins in his wheel chair.

I also found Lego therapy. And some work has also been done with autism.

Google seems to have a special afinity with Lego.

Do you?

Tuesday 8 January 2008

X-Men classes!

I recently watched a couple of the X-Men films again. And thought I would write a post about it, but whilst googling I see its been done before. Two interesting posts about the X-Men movies from the perspective of disability rights are "A 'Last Stand' Against Cure" from the magazine Ragged Edge Online and "More thoughts on autism inspired by the X-men film trilogy" from the blog 29 Marbles. And I'm sure others.
If you're not familiar with the X-Men series of movies - or the Marvel comic books on which the films are based - the basic story is of a group of 'mutants' and their struggle to gain acceptance by non-mutants.
But also whilst surfing I found that you can send your children on X- Men classes!

I’m surprised there aren’t any Autistic Star Trek Academies or Rain Man training centres or what about a Mr Bean Autistic Comedy Club. Or maybe there are?

Reading American blogs about autism, we here in the UK are in comparison are very quiet, we don’t have as yet the likes of Jenny McCarthy or Ransom notes or X-Men classes. My non blogging English friends have never heard of these! Oh we did though start the MMR scare!

Joking aside. I take C back to boarding school today, whilst washing and packing with mixed feelings about his return, i started reading about the tragic case of 3 year old Katherine McCarron. For those of you in the UK who may not have heard, her mother Karen a Doctor smothered Katherine to death in May 2006. Katherine was autistic. The trial has just started. Autism Vox will im sure keep you updated.