Sunday, 27 September 2009

Celebrating 21 years!

I want to bounce into C’s room singing ‘happy birthday’ giving him a big hug and showering him with kisses and presents. But I know what would happen if I did. And it is not about me.

So I walk into C’s room, he spies me with his peripheral vision. And then he looks at me, head tilted upside down, fingers pressed into the corner of his eyes. C hums loudly to drown out anything I might say. So I whisper in short sentences not directed at him but to the birthday present I am holding. His humming becomes quieter as if he is straining to hear what I am describing. I don’t give C the present as I know he will push it away so I open it and leave it in his room for him to look at in his own time. But I know he won’t touch it, he hardly ever touches anything, his fingers are glued in his ears.

C doesn't want for much, I have to be inventive. So apart from a few presents I give him experiences – memories.
Because of C's love of loud music we went to see We Will Rock You.
And for his love of travelling fast and in straight lines we went on a speed boat trip on the Thames.

I could not blog without mentioning the dehumanizing (on so many levels to both Autistic people and parents) Autism Speaks video. But I have been finding it hard to put into words how it has made me feel as a parent of a young man who is 'low functioning' (I hate that term as C 'functions' as best he can) Even though C does not speak - with patience and understanding I learnt to listen to him.
His first school would not listen to him so I fought for one that did. His first group home did not listen to him so I found one that does. All without voodoo or fighting a disease – but fighting a system and by doing so I hope we have educated a few people along the way in their attitudes and listening skills.

By accepting C's Autism and working hard to help him I am not a warrior, or victim or hero. I am a mum who listens to my sons needs - it is C who has had to do the real hard work every day.

So don’t listen to Autism Speaks and their negative stereotypes.
(Excuse me while I have a C moment humming loudly with fingers in my ears)

With the right attitude and support and understanding children like C grow into adults who do have a good quality of life.
My son was not robbed from me and nor were my dreams.
I still want for C what any mother wants - for him to be happy healthy and fulfilled without pity and prejudice to reach his full potential.
We are hopefully on the right track.

Happy birthday C! I did manage to get 1 kiss in! You have taught me so much. I am so very proud. May you carry on touching peoples lives. Diversity makes the world a better place and love makes us stronger.

Sunday, 6 September 2009

Liberty Festival 2009

Liberty Festival; celebrating the contribution of Deaf and disabled people to London’s culture, in Trafalgar square. A lovely afternoon out with lots to see. I took C last year, but this year I went on my own which meant I could stand around and watch things – which I can’t do with C (unless its trains or feet!) There was much going on...

From comedy to music.
To aerial street art from Blue Eyed Soul and dance.

The story Swan for children and talented Mouth and foot painters.


Marc Brew showed a very touching performance ‘Nocturne’ which if C had been there I had visions of him stripping off and bouncing on the beds (as he has done before in public!).


There were stalls. BBC Ouch was there, Attitude is everything, Unison, Disability Law service, The Olympics to name but a few. Last year there were a few Autistic things going on, but sadly I didn’t see any this year.

The lovely Tracey was there from The Independent Living Alternatives was there whom I met last year when she gave a talk to the London Autistic Rights movement (who remembered me as Monster Munch!) and was desperately trying to find something for C when things were going wrong for him. But even though I do like the idea of Independent living I find it hard to see how it would work with someone like C who is so vulnerable and easy to take advantage of, especially after our recent experience of staff. But who knows what the future holds. Would love to hear of where it is working.


Antony Gormley’s fourth plinth had a lone person on it - a living monument , who must have had a great view of what was going on. There has been a parent up there raising awareness. And Julie will be there on sept 15th. I also applied to do this - but so far no luck - will call upon you all for inspiration if I do!

I love Antony's work and blogged about his exhibition I went to a few years ago and how it related to C.

C is continuing to do well and I am happy with how it’s going. He is looking so much better, standing up straight, smiling, a glint in his eye. Change though is hard for C and he is still head banging more than I would like, the calcified oedema on his head has become puffy as it fills with fluid before hardening. And that’s what I can see on the outside of his skull – what is happening on the inside? As Tanya describes it - transition a time of hope and anxiety.