Friday, 11 April 2008

Time out

I'm going to take a break from blogging (maybe i will just do the odd post here and there?) as i have to focus on Cs future ( he is leaving school soon) and my sanity ( funding battle)
So i would like to take this opportunity to thank you all for your support and kind words over the last 8 months. I'm sure i will pop in on you from time to time.

For me my post yesterday sums it up, as parents we need to listen to autistic people (you will find many wonderful bloggers at the Autism Hub)
So heres one last message from C;

I don’t want to be treated like a child.
I want respect.
I don’t want to be ‘trained’.
I want the opportunity to grow.
I don’t want to fester in a local day service, or in a home.
I want to be an active member of the community.
I don’t want pity or patronizing.
I want to be valued.
I don’t want neglect or abuse.
I want to feel safe.
I don’t want lack of resources to be an excuse.
I want a creative approach.
I don’t want institutionalised staff.
I want people who really care.
I don’t want people being complacent about my behaviour.
I want to be nurtured.
I don’t want special services.
I want opportunity.
I don’t want to ‘fit’ into existing services.
I want choice.
I don’t want to miss out because of risk assessment.
I want some fun.
I don’t want
to be cured.
I want
I don’t want charity.
I want integrity and dignity.
I don’t want to be disabled by society.

I just want what everyone else has.

Wednesday, 9 April 2008

Out with the old.....

The puzzle piece logo was first introduced by the British National Autistic Society in 1963, it depicted a sad child who did not fit.

We have come along way since then and know a lot more about autism, social representations change over time. Autistic people do fit in society, so the NAS updated their logo. People with autism and parents are always challenging the way autism is portrayed. There is so much negative press, an image of a puzzle, with a piece missing, simply does nothing to raise positive awareness with the general public.
“The usage of the infinity symbol as a representation of autism, started by Aspies For Freedom in June 2004, was a reaction to the negative connotations associated with the jigsaw symbol commonly used by parents to represent autism. The jigsaw symbol is seen by much of the autistic community as an insulting reference to the fact that autistics can appear puzzling, in need of "fitting in" with society, or as having "a bit missing". It was felt that the infinity symbol better represents autistics by representing logic, persistence, perseverance, and unity of form.”

Autistics. Org has responded to us parents by selling a button that reads, "I am not a puzzle, I am a person." In addition, Oddizms has created a rainbow moebius ring with the statement: "Many autism spectrum adults object to being objectified by the puzzle ribbon ... They want a different symbol and here is my offering"I feel as parents we should listen to autistic people themselves. As the National autistic societies have updated their logos and their thinking - so should we parents. And if you haven't seen it yet - you must watch Bevs video.

Lastcrazyhorn has some beautiful art work as an alternative to the jigsaw.

Joeymom has also been busy!

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

Monday, 7 April 2008

Brain Art

William James "The greatest discovery of my generation is that man can alter his life simply by altering his attitude of mind."

Which picture do you think represents your brain best?

Sunday, 6 April 2008

What's in my bag?

Motherhood for Dummies asked me what was in my hand bag.
Not that long ago i used to have what seemed like a Tardis for a bag. Being the mother of an autistic child you have to be prepared for the more unusual eventualities.
As you know C doesn't speak, but he also doesn't ask for anything like needing to go to the loo. I have to promt him, and of course i don't always get my timing right. So i used to have to carry spare clothes. (My timing is better now) Incredibly sometimes he wont go to the loo for days at a time, no matter how much i give him to drink.
Yes i used to carry a swimming float. Any ideas as to why? Its light, portable and great for slipping in between Cs head and the surface he was headbanging on. (When small i would use my hand or foot, or bodily lift him away.) Now he wears a helmet.
Pecs.....ooops wrong pic
Pecs, i carried Pec symbols about for years, just in case he would start using them.
And to some places i would take a portable DVD player.
And of course a supply of chopsticks!
Before the days of C having his fingers permanently in his ears he would never been seen without a chopstick which he would tap on his face, but occasionally they would fly off never to be seen again.

Those days are behind me now and thankfully my bag has now shrunk. It also had to shrink because of my injury to my leg i can no longer carry heavy things.

So now i just carry the necessities, our disabled bus and train pass, a carers card in case something happens to me. (I used to have an Alert card - but never used it) A Radar key - for public disabled toilets. Phone. Wet wipes for tomato Ketchup emergencies (he prefers to eat with his fingers) and he also will on occasion smear when out, but we wont go into that! Sudoku book and pen, notepad in case i have a blog brainwave - and a crystal. And for some reason i still have a chopstick in there!
What unusual things do you carry in your bag?

Friday, 4 April 2008

Actions speak ...

Louder than words.

Do you ever find yourself trying to speak but the words don't come out? Or they do but its not what you wanted to say? You might be nervous or anxious or shy. Do you find it difficult to get your point across so that people understand? Sometimes writing a letter is easier as you can express yourself better.
Talking is not always straight easy!

My son doesn't speak. I don’t know if C cant or if he has chosen not to. I don’t know if it is an anxiety thing or if its too painful or difficult. He has also refuses to use PECs or signing, or any other assisted communications technology. As C has got older and i understand his autism better i respect these choices, but I will always offer him options as they arise. Such as FC. (You may have heard of Carly)

When C was younger I used to long to hear him speak. I thought speech and language were important. If I am honest I wanted to hear him say ‘mum’ or ‘I love you’ just once. But as he grew without words, i began i realise that he didn't need a voice to say these things as he said them in many other ways.

C learnt at a very early age that head banging was a effective way of communication. So effective that he still uses it, but now it is a last resort.
C is by no means mute, when he is happy his high pitched squeals are ear piercing. And a delight! (the general public may think differently on this one!)

C is very physical in that he rocks, flaps, flicks, paces, jumps, slaps himself all the time. C is reacting to his surroundings. He is communicating.
Amanda Baggs puts it like this
"My language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings.
Far from being purposeless, the way that I move is an ongoing response to what is around me….The way I naturally think and respond to things looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all. But it is a way of thinking in its own right."

Words are only 7% of your communication.
Tone of voice is 38% and the other 55% of our communication is body language.
C uses 100% body language!

Thursday, 3 April 2008

What have all these people got in common?

They are all possibly on the autistic spectrum. For a more complete list, have a look here.

Many of them have helped shape our world today. Our children will help shape our world tomorrow.

Wednesday, 2 April 2008

World Autism Day

For me this stands for the same as world peace. (I don’t want much do I!?!) Peace has to start with understanding, tolerance and acceptance of others.
An understanding we are all different, we all have quirks, we all have different needs and we all want to be accepted.
So my wish for world autism day is that people be more patient and understanding of each other.

I think C would wish us to view his autism as a different ability rather than a disability. He is a person first.

What would your wish be?

I saw this over at Whose Planet Is It Anyway?

'I could tell you so much more, but instead let me share one last insight. Don't pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for "normalcy.'

For more see here.

Tuesday, 1 April 2008

Let us not forget

Tomorrow is World Autism Day.
Let us not forget the real reason behind the first World Autism Day declared by the United Nations General Assembly, to raise awareness to the world, but especially the third world countries.

In modern society we take so much for granted. Life for C and I would be so different without what we call the basics such as a DVD player and Thomas the Tank Engine. Washing machines, microwaves, supermarkets. I don’t even give a second thought to what to some is a luxury like having water on tap, or light at the flick of a switch.

And no Internet! Doesn't bear thinking about!!
And the many battles I have fought, for what I have felt are Cs basic human rights.
How fortunate are we that these services are here for me to fight for. Many families in the third world do not even have basic education or health care, let alone special ed provision and speech therapy etc.
These thoughts are very humberling. For all of us.