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.

46 comments:

Petunia said...

Looks like an amazing festival! Would love to go to one :)

Glad to hear C is transitioning well into his new home and hopefully the headbanging will reduce as he gets more comfortable with his new surroundings. I still can't believe the difference in the two pictures you posted recently on FB. He looks so much happier!

xxx

TOM FOOLERY said...

Looks and sounds like a good day was had in London. Fingers crossed that you get on the plinth - great artistic concept by Antony Gormley I've been following it on SkyArts. Glad to read that C is doing OK :) TFx

Kit Courteney said...

That looks like a wonderful day out. I clicked some of the links and they were fascinating.

I do hope C's head banging improves - it must be such a concern to you. Very glad to hear he has a glint in his eye though :0)

Debs said...

The festival looks amazing, I'm glad you had a good time.

So happy to hear that C is settling in well, and hope he gets used to being there as soon as possible.

Best of luck with your application to be on the plinth.

Beth said...

May the hope, the “doing well” and C’s smile soon outweigh the anxiety during this transition.
Love the pictures – brought back memories of my trip to London last fall.

Sandi McBride said...

I love festivals...this one seems a treat...
as for your beloved boy, change is hard on anyone and when you have the troubles of that sweet child, it's just a bit more to deal with...but deal he will...I have no doubt in my mind!
hugs to you both
Sandi

lonestar said...

What an interesting and fun day!

I'm glad to hear C is doing well - standing up straighter and smiling more must be such a joy to see :). Hopefully the headbanging will lessen as he gets more accustomed to his new surroundings.

The Dotterel said...

That sounds a truly wonderful event - one I hope to go to next year. I'm glad C is a little more settled, tho' it's clearly going to be some time before things are better. I, too, applied for the plinth (without luck, so far!) If I win, I'll invite you up there with me, ok?

CrackerLilo said...

It looks like a terrific festival!

I'm glad C's doing well, apart from the headbanging. Hope for both your sakes that it ends (or at least decreases) soon.

Paulene Angela said...

Oh C standing up straight, that's so positive, may be he feels like you that some weight is finally being lifted, apparently that's why we drop our shoulders and back, it's the psychological weight, cannot remember where I read that, I think it was my friend who is a physiotherapist.

Big hugs, thanks for the wonderful news and updates, looking forward to my next trip to London.

Mrs. C said...

Sounds like more hope than anxiety, and I am encouraged by your post!!

bobbie said...

So glad that C is doing well. You must feel such relief.

The Liberty Festival sounds like a great day. As soon as I can I will follow all of your links and have a closer look. I've only managed a few so far (including Harrods. What a hoot!)
Always happy when I see a post from you.

Akelamalu said...

The festival looks and sounds great! It's good to hear that C is settling well, it must be a relief to you. The headbanging is worrying for you though, I hope that improves. :)

Maggie May said...

Glad C is doing well at his new place & that you are so positive about it.
Hope something can be done about the head banging which must cause you great distress and C great pain.

The festival looked really action packed. Pity there wasn't more on autism.

Ron said...

Hello Dear Casdok!

I was so happy to see that you had posted today!!!

OH WOW!...the festival sounded like a wonderful time! I've seen paintings done by mouth and foot painters before and they're amazing!

I'm so glad to hear that C is doing well - YEEEPEE!

You GO, C!

Sharing much love with the both of you!

{{{{{ x Casdok + C x }}}}}

Kahless said...

I am happy that C seems to be doing alright in his new pad. The festivl sounds like it was cool.

kathleen said...

That is a festival that I would have enjoyed going to. Isn't it odd, when we go to things like that with our kids-we are very focused on watching our kids...and when we go to something without them-we notice the things they would have done if they had been there. :)

Suburbia said...

Looks a great day.

Glad C is looking happier :)

I have a friend who cycling from Lands End to John o Groats in a couple of weeks time. He is part of several cyclists who are doing it as a challenge for themselves, but also to raise money for an autism charity. I don't have all the details yet, but will put a link on my blog to his (where people can donate, I think) when it is up and running. I was wondering whether you would link to it too, once you've looked at the site, if you think it's appropriate? I won't be at all offended if you don't wish to!

S x

laurentius rex said...

The only way I would be seen on Anthony Gormleys plinth is if I was there to kick the arse of someone who I thought was only there by official sanction.

It ain't the official sanction that makes it art, it is the disobediance that would, because Gormley is establishment, what I do and always have done is street art, I was a street artist before the concept was invented, I hate establishment rebellion, because it is not really rebellion at all, and it certainly is not real art, because that is all around not imposed by committees.

buffalodick said...

Sounds promising, though.. Glad you got out and about a little!

deb said...

I'm so happy to hear the C is doing well. It's funny, the festival is by the Deaf and Disabled. I never think of deaf people as disabled. Looks like an interesting festival though.

secret agent woman said...

I'm so glad you got a chance to go and just relax and enjoy it. Looks like a great event.

Tanya @ TeenAutism said...

Oh, yes, still the difficulty of transitioning, even if it is in a positive place. I'll continue hoping that C adjusts to his new surroundings enough to reduce the headbanging. Sending love . . .

motherx said...

What a brilliant day out! I wish that I had known about it as I could have met you:) Boys prob would have enjoyed it aswell.
So glad that Cs home is working out, fantastic news. xxx

claire p said...

The festival sounds amazing, I will try and go next year. I'm glad C is getting better, fingers crossed the head banging stops. And Happy birthday!

Green Girl in Wisconsin said...

Oh his poor head!
Glad to hear he's doing better in other ways, though. Such progress for C this summer! Grand news!

Green-Eyed Momster said...

Oh Casdok, I love the pictures in your posts! It's almost like being there.

I'm sorry that C is banging his head again. Can you get him to wear his helmet? I don't like change either. I hope it gets easier for both of you!

Hugs and love,
GEM

Dianne said...

the image in my mind of C with a glint in his eyes is making me smile

the festival looks wonderful

think of you often
I was making those puree pops the other day and really thought of you and C

Rebel Mother said...

Looks like a fab festival!

I am always amazed at the mouth and foot painters...their work is truely inspiring - so clever.


C's headbanging may lessen once he is fully settled, but at least he is happy.

Good days.

RMxx

jazzygal said...

Sounds like you had a lovely day Casdok and what lovely photos!

Glad to hear C is settling in and happy. Hopefully headbanging will reduce soon. x Jazzygal

laughingwolf said...

that's simply a great event, cas :)

Jade said...

Hi my friend! I am soooo glad you had the chance to stroll around during your outing. You deserve it! And it's a great way to make and build connections.
And I am soooo glad to hear the C is adjusting to his new environment. The last place took a toll on him so it's awesome to hear that he's more comfortable and that you are more comfortable with him being there.

Hugs to you my friend!

Crystal Jigsaw said...

Yes, independent living is a difficult one. Of the pictures I have seen of C, he always has a glint in his eyes, particularly when he is with you.

CJ xx

Shawnda said...

Awesome sites. I absolutely love your faces of autism site!!!

nitebyrd said...

The festival sounds amazing! I'm glad you were able to take it all in.

It's also good to hear that C is doing better. Good thoughts to both of you, always.

lisadom said...

you are such a strong lady and a constant inspiration to mums like me.
I am going to keep thinking about C standing straighter, smiling and sparkling more; and try to send you good vibes about the oedema.
I look for the same signs on Boo's poor hands - (he chews) so I can imagine how much more anxious the head banging makes you.

The Festival looks brilliant!
xx

Dave Coulter said...

Looks like a wonderful festival. Your point about transitions is well taken - I think it's in our nature to see what's around that next corner!

As always, keeping fingers crossed on this side of the pond.

:)

Seamus said...

I'm really glad to hear that C's transition continues on a positive note. :)

lime said...

so glad to hear that you continue to see some really clear positive results since C has moved. here's hoping he settles on the head banging soon. i know that must be very worrisome.

LceeL said...

I am so glad to hear that C has transitioned well into his new environment. My third son, our Asbergers boy, is in college, now, and participating in our country's Air Force ROTC (Reserve Officer Training Corps) program which is administered at the school he is attending. He is studying Japanese and hopes to become a teacher of full time translator. He has come so far. It's the work that you and others like you do to raise awareness that has enabled our son to get as far as he has. Thank you, my Lady.

Anonymous said...

Maybe C just likes the feeling of banging his head. Lots of autistic people do it when nothing's wrong. Maybe it feels good.

Casdok said...

Yes he can do it just as hard when happy.

Ellee Seymour said...

I've never heard of this event, how very interesting.
I'm glad to her that C is making good progress. He is blessed with you for a loving, patient mum to help him through his difficulties.

M said...

They should have a Feet Festival so that C could go and just be in complete heaven. Oh that would be perfect.

Suburbia said...

Hi Casdok

Just to let you know the link is on my blog for the charity bike ride. The charity is not specifically and autism one, but have a look and link if you would like to and think it is appropriate.

Hope you are well and that C continues to feel more settled in his new abode.

Sx

DJ Kirkby said...

That looks like fun but very noisy and overloading too. I've tagged you at mine. x