Sunday, 29 March 2009

Out and about...

C has been assessed by another home. Calculations have been done. His current home have now been told that he is leaving- oh you should have seen their faces!! So we are now working out a transition plan.
In the mean time C and I have had some great days to distract us


C enjoys the London eye so much whilst waiting in the queue he was so excited (big loud stimming!!) they gave us a pod to ourselves!!






As C seems to love views I had wanted to take him up the Spinnaker tower in Portsmouth. So when I heard DJ Kirkby was doing a book signing there it was a great excuse to go!
The above photo is C standing on Europe’s largest glass floor 100 meters up.






And we both very much enjoyed a Duck Tour round London. The tour is both on land and on the river Thames. C only tried to dive in once!








I have known Lucy Baxter for years and was not at all surprised to see her stirring up public opinion recently. Some of the things she said were of course taken out of context. But has highlighted a taboo subject and much needed debate. Seeing our young men as adults with feelings not perpetual children who listen to nursery rhymes.

I would like to wish my brother well as he does a charity bike ride for MS in America. I just hope he doesn't end up like i did when i did my charity hike in the Himalayas. Let me know if you would like to sponsor him :)

And last but not least.
I wasn’t going to go on the London Autism Rally yesterday as to advertise it they were using such words as epidemic (which as you will see here is not a good word to use) and a few other words I did not agree with. But the organisers said they wanted to try and include everyone, and they did change some of their wording. So when the London autistic Rights Movement asked C and I to go to promote neurodiversity we did! Here are some photos.

There were many banners from pro -cure to anti-vaccine so i am very glad i was there with The London Autistic Rights Movement to make the case for acceptance. However to on lookers it must have been very confusing.


Out side Downing street.


We ended up in Trafalgar square.

I met some lovely people and was asked on several occasions why I didn't want to cure C. So i came away feeling as though i had done my bit. C enjoyed his day out to. And i was beaming with pride that we did this together.

102 comments:

Honeysuckle said...

I'm so glad to hear you've found a new home and hope it works out this time for both of you.

Those days out look great fun altho' I don't think I could go on the London Eye, or anywhere so high up, no matter how much Buster enjoyed it!

Kelley @ magnetoboldtoo said...

I literally squealed with delight reading you had found another home for C.

For some reason my computer is not playing nice and I can't see the pics. But I will persevere. Cause I wanna see the joy in your faces!

<3

Anonymous said...

Hi thanks for attending our rally, perhaps next time we could have a speaker from ND. I spent a little time speaking to Paul W from your group and am really glad that I did.
I was fantastic to march through london as one, even though there is a huge spectrum of beliefs and abilities we after all all have one thing in common , love for those with ASD,s.
till next time
Mark
www.openyoueyestoautism.com

Jen said...

I'm so glad that you've found a new home for C- my fingers will be crossed that it works out very well.

Thanks for the article on Nancy Baker- she's a brave woman!

Paulene Angela said...

Good for you and C, glad you finally attended. I would have found it really hard not to be part of the action.

As for the word epidemic, it mixes with labels, "Oh what label shall we give him/her?"

Oh to have been a fly on the wall at C's present home when you gave them the news.

Lots of Hugs from Estepona.

menopausaloldbag (MOB) said...

Oh I hope so much for you both that the new residential place is much better than the current one. Good that they were surprised/shocked/cheesed off at your announcement to move C. All the best with that. One day I'll make the London Eye as it look amazing. How terrific that C finds such great joy and stimulation from activities like that. You are such a great mum.

BenefitScroungingScum said...

Oh goodness that's such wonderful news! I'm so pleased C has a new home to go to and that you've both been having such a great time out and about. Love to you both, BG x

Beth said...

Wonderful news about the change in homes.
Love these catch-up posts you do! You combine the fun you have with C with your commitments and very busy life!

Also love the pictures – brought back memories. Should have looked you up when I was in London last fall. (Too shy?) Maybe next time…

bobbie said...

Your Spinnaker Tower is awesome! No wonder C loved it.

I'm so glad you've found a new home for C. Hope this one works out really well.

Doing something like the Autism Rally together must have been a great experience. It' hard to go along with gatherings like that one sometimes, when you know there are diverse opinions and causes involved. But it seems to have worked out well for you.

Lady in red said...

I am so glad you have found a new home for C and just like others I hope it works out.

Can you believe I have never been up the spinaker tower but its on my list of to do things

Cheryl said...

I'm so very happy for you and C. I hope the transition into his new home goes smoothly. Keeping you both close in heart.

What fun you both had on your adventures. Thank you for letting us comea along and enjoy the ride.I have never been to London and I loved the pictures. I could tell C was enjoying himself.

Take good care of yourself.
XXXXX

starrlife said...

WoooHooo! A new place, hopefully a bit more advanced in its treatment philosophy! You sure have been busy. It all sound like fun!

Debs said...

I'm so thrilled to hear that C will be moving to a new home. You must be so relived.

That photo of C above the glass floor made my feet tingle, and I was looking at it from the safety of my house.

TOM FOOLERY said...

Hope the transition goes smoothly for you both. Glad C loved his time in London. I'm liking that tower in Portsmouth, might just pop down there during half term. Thanks TFX

Akelamalu said...

I'm so pleased you have found a new home for C, I hope he'll be happy there. :)

C has a great deal of courage to stand on that glass so high up - you wouldn't catch me doing it! :0

Hammer said...

Neat landmarks. I would probably get vertigo in that glass tower.

Glad you enjoyed the day with C.

Jules said...

It sounds like things are finally going well for you. Are you seeing that light at the end of the tunnel now? : )

Glad you and C enjoyed yourselves at the rally. It looks like there was a pretty good turnout for the event.

C must of loved having a pod to yourselves--great views with plenty of space.

JoyMama said...

Grinning from ear to ear. What a wonderful update!

The Finely Tuned Woman said...

At any moment, you can always be found doing your share, unfailingly. You are one heck of a women. I admire you a great deal, It would be so much easier to sit back and do nothing. But you never choose that option. Everyone should have such dedication.

Maggie May said...

Glad that C is going to find a better place to live. Also that you had such a good time together in London. I have passed The Eye so often in the coach to daughter's but so far haven't been on the ride. Grandsons did and really enjoyed it.

Good for you getting so involved and enlightening people.

Almost American said...

Here's hoping the new home turns out to be a good one!

How did you feel about being given a pod to yourselves on The Eye?

I loved the Eye when we visited but I think the Spinnaker would leave me terrified!

rainbowmummy said...

Crying now xx

mumkeepingsane said...

Yay for a new home for C! I also really enjoyed the pictures.

Bobbi said...

That is awesome! What cool places you have to go to in the UK. I'm glad you decided to go the autism event with C. You should be proud!

Rosie said...

hurray for a new home... and a few steps further towards helping everyone achieve their full potential and acceptance for their uniqueness.

Maddy said...

That sounds just fabulous all round. I heard about the debate via woman's hour which I listen to on my ipod. I was very impressed with her and the usual arguments which seem all too obvious. Whilst I love kids there still seems to be this pervasive need to 'keep' them as children.
Cheers

claire p said...

I agree with acceptence not cure, how can you cure something like autism anyway? That would be like saying my blue eyes need curing, they're just part of who I am.

Glass floor! Oh er! Don't think I could handle that.

Warty Mammal said...

Hooray! This is all great news.

So glad you and C have been out and about, having fun. The London Eye looks like a hoot.

Carol said...

Your experience here with people asking about "curing" your son is EXACTLY why I hesitate to go to the Autism walk next month. I tend to avoid those things like the plague but then wonder if Sayer would enjoy it and I'm denying him.

AnneC said...

Good to read that C will be moving - the place he's been living sounds like they clearly don't respect him or have the first clue of how to relate to him. I love reading about you two going places and C enjoying the views. :D

Shea's Mom said...

Thanks for visiting my blog. This looks like it was a very interesting trip. Good luck with the new group home. And, scary story about the 6 coppers hassling you guys at the airport. I thought the US had the only storm trooper mentality. I guess not.

Take care and hang in there.

XO

Marj aka Thriver said...

Awesome photos! Best wishes with the home transition plan. I know with my son who has sensory integration issues, having a plan for transitions of almost any kind is of utmost importance.

Halo said...

Glad you have a new home for C and fingers crossed everything is 'thumbs up' this time!

Pictures look great and looks like you have been keeping busy and having fun.

All the best xx

Cath said...

Glad you are looking at and getting a different home for C. You sound much calmer and much more settled all round.

Amanda said...

I don't want to cure J I just want acceceptance.

Hope the new home works out.

Hammie said...

But that was the best part Cas! That the anti vaccine and the genetic and the Acceptance not cure crowd all got together to march.
I am all about research and evidence and using that to make the provisions as needed, so I don't mind some of the groups that are looking into causes (as if) if they are also researching interventions and supports and offering concrete help and assistance. Research and collect the evidence, have it peer reviewed and replicated in a double blind study and then show me the data; then I might start to believe it.
Until then; the world is round, we evolved from single cells and will continue to evolve as beings capable of accepting and supporting all kinds of diversity. But I won't boycott or block a group researching all the possibilities - as long as they are not promoting something as a cure

Communication is what it is all about and we should listen twice as much as we talk. (2 ears, one mouth)

I will go on the record as a genetic disciple and only this evening took part in some tests and gave another 5 tubes of my finest AB+ to the World Genome project. The most hilarious thing about the magic medicine "cure-alls" to me is their inability to accept another person's point of view. That alone should qualify them for the genetic research project - as a subject!

To me Bio meds is like firewalking; you have to believe in it or you get burnt. And I don't have that faith.

As for C and that glass floor! I am getting icky thinking about it. It is like one of those dreams when you are on the edge of a 12 story building. Don't think I would have made it out of the elevator myself. But then I am always assessing the probabilities of something going wrong.

xx

Jayne said...

Thank goodness you've found a new home for C, must be a weight off your mind!
I can't understand how they can mouth platitudes of dignity, acceptance and individuality yet treat young men as though they were children.
In 2009 FFS!

david mcmahon said...

Casdok, the key word there is ``together''. And that second photo is as good as any I've seen. Makes you look, makes you think, makes you admire the angle.

By the way, would you care to do a Sunday Roast interview .... a long-overdue invitation.

citizen of the world said...

I hope the transition goes well and that this is a better home for your son.

Mrs. C said...

Here's hoping C's new home is able to help him live a very full life. That they are able to know when he needs something and when to back off.

I wish I had the article still, but I do know of a married couple with Downs in our area. (Hopefully that's the right way to say it, if not please just accept the "spirit" in which it is written.)

They are also high-functioning as your friend's son, but their parents check in on them from time to time to make sure all is well. The one thing that bothered me about the article was that it contained several paragraphs about the use of birth control.

Ok, not going there... but I'm guessing you see where this boat is drifting. :]

Ron said...

Helloooooo Casdok!

I'm so happy to hear about finding a new home for C. OMG...and I would have LOVED to seen the look on their faces when you told them!!

HA!

You're day out together sounded AWESOME!!! However, please tell C that he is MUCH braver than I am about going on "high tower things." Even as I was looking at the second photo of C's feet on the glass floor....I just about freaked!

Hey, we have those Duck Tours here in Philly too. I've never been, but should try it this summer.

Thanks for giving us an update, dear lady. It's always so wonderful to hear from you!

Love to you and C!

X

StatMama said...

Sounds like a great day! That glass floor makes me feel a little woozy lol I hope the transition plan goes well for C.

Tanya @ Teenautism said...

Wonderful! So glad to hear that you were able to find a new place for C. And I love seeing the photos of him out and about with you!

DJ Kirkby said...

I was so thrilled to see C and you walk in the bookstore! Less thrilled than C who like any teenage boy, finds bookstores incredibly DULL! If he sigh loudly once he must have done it at least 10 times, soooo funny. You have been busy though haven't you? Looking forward to seeing you again soon. I am so glad you have found a new home for C, hope he loves it there, he is a great person and very tolerant of his 'boring' mum. xo

Mistress B said...

I'm so glad you are getting an alternative home sorted out. that must be a weight off your mind

loving the pics from your trekking around the place :)

Phil Plasma said...

Hopefully the new place will be better suited to C's needs. I imagine it must be hard for you to remain hopeful.

nitebyrd said...

I'm very happy that you and C are finding a new home for him to be able to feel comfortable in. The day you two had together sounds like it was wonderful. YAY! to both of you!

lime said...

i am glad to hear you and c have had such terrific times lately. i do so hope the transition will go as smoothly as possible for you both and that his new home is a place of comfort, peace, and benefit.

Green Girl in Wisconsin said...

Yay for a new home! I hope it goes really well for C and for you.
I cannot imagine how conflicted you must have felt about that rally. Sometimes a streamlined message is just easier--I've often felt that when a rally/cause gets bogged down in appeasing all the little subgroups, no one leaves happy.

Suburbia said...

So glad you have found somewhere better for C. Nice to catch up with all your news.

Leigh said...

Love this post, Casdok. Love your days out. Love your refusal to take-any-crap.
x

whimsical brainpan said...

I wish I could have seen their faces.

Oh that glass floor is just too much! *shudder*

I like the word neurodiversity.
:-) I'm glad you went and had your say.

E said...

Finally. Yea, we have been anxiously awaiting your news. is the new place close to you? Does C understand that he is moving? Brace yourself for the transition sweetie. There will be bumps. I always find trying to modulate my hope in new situations being the hardest and most productive work I can do.
Trust yourself and remember we do this whole life thing in pencil. We can always use the eraser. you are brave to do it. I admire you and that beautiful courage you carry around Casdok. You inspire me

Casdok said...

Thank you E.
Yes the new home will be closer which will be great. But no C dosnt understand and wont till he has actually moved in. So it is going to be really tough on him. So i will need courage!

Traceytreasure said...

I was working this weekend and missed your post. It's filled with happy news!
I know a gal (Pita-woman) who is also doing the run for MS. I wonder is she knows your brother. Small world, huh?

Great post, great pictures! I feel like I was there. I've always wanted to visit there and see Trafalgar square!

Big hugs for you and C!

motherx said...

Really happy that you have found a new home. I hope it works out for him. Your days out look great....why cant I live next door to you? youd be great to motivate Tony!!
Rally pictures look exciting. Im sure you got your point across and made people think:)
See You on Sunday :) xxx

Dave Coulter said...

Looks like brighter days are ahead - and not just because it's springtime!

Casdok said...

Mother X this is why i put up the photos of our trips out - to hopefully inspire others. Its only been in the last couple of years C has been able to do days out like this. So im making the most of it!!

Trixie said...

I'll have to go to portsmouth now just to stand on that glass floor!

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Flea said...

So good to see you working together. But the shot of that glass floor? Terrifying!

Thank you for making a huge difference!

Patrick @ Caregivingly Yours said...

Casdok, visiting your blog I ALWAYS spend more time than I plan, clicking links and frankly learning. Thank You for the time you take to put it together.

Your comment about the rally being confusing to on lookers is somewhat the way I feel everyday trying to learn living with autism since we invited a single parent and her autistic 16 yr into our home 7 months ago. Each family's story is so different.

I suspect you have understated the extraordinary effort and time you have just begun on both your parts to find and transition to the best of possible homes.

Caregivingly Yours, Patrick
http://caregivinglyyours.blogspot.com/

laughingwolf said...

grats to c on getting a better place to live :)

always good to hear you're making headway, too, cas :D

Holly Nappi Collins said...

Wow, how wonderful! Thanks for sharing the photos too, I love London and would love to take Nick someday! And I would have loved to see the school's faces when you told them C was leaving! I can only imagine!

Kit Courteney said...

Good news in abundance!

What a lovely post.

And great photos! How fantastic that C enjoys those views. Very brave!

FXSmom said...

I'm glad you are getting him moved. After that 2nd time of him getting hit ....ridiculous! Keep us updated :-)

Anne Brooke said...

So glad that somewhere new has been found - and hope it really works out this time for you both.

Love & hugs

Axxx

Joeymom said...

Yay, new home! I hope it really turns out well for C and for you!

Elizabeth Channel said...

Thrilled about the new home! These pictures speak such volumes...

buffalodick said...

Hope the new place works out better than the last....As always, Good Luck!

CC said...

Love the pictures. And good for you!!!

therextras said...

Acceptance. Yes!

BT said...

Absolutely brilliant news on finding a better home for C. I hope the transition goes smoothly for you. I haven't been up the spinnaker yet and I have a home in Worthing! Jealous.

Love the way they gave you your own pod on the big wheel thingy!

Well done for going on the demo and I hope it does some good.

earthlingorgeous said...

Wow! C looked like he really enjoyed the view! Oh the stimming he was really excited.

I agree with your advocacy acceptance and not cure is what we really need. Good thing here in the Philippines some are more tolerable although they have misconceptions they are understanding autism slowly but surely.

Dr. Deb said...

Oh, I hope the new assessment will help find good things for C.

deb said...

Hope the new homes works out. Looks like C. had a wonderful time sightseeing. I can't imagine standing on the glass floor, I'd be lying down on it, crying with my eyes closed.

Lucy Baxter sounds like a wonderful mother. Why shouldn't handicapped people have sex? I wonder sometimes about Katie, if she'll ever have sex. It would be sad to go your whole life and not be able to enjoy sex, it's such a part of life. I guess we'll see.

Working mum said...

So glad you've found another home for C. I hope it turns out to be much more suitable. Looks like you had fun on your trips out. I'm aiming to take my daughter on the London Eye at Whit - if I can stand the height!

Crystal Jigsaw said...

Having been emailing about this and that I just want to say how pleased I am for C about his new home.

My love, CJ xx

Jade said...

I have been thinking about you and C so much lately and its been driving me crazy that I haven't had the time to sit down and write you properly! I am so glad to hear that he is in the process of possibly being transitioned to a new environment. You both deserve that relief.

Where abouts is your brother doing the race? Lets hope he kicks butt!

Big hugs to you and C my friend. Expect a email from me soon! ;-)

Dad Stuff said...

I don't know how you find the energy to do so much.
But I'm glad you do.

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Dazza said...

London Eye pod all to yourselves... very classy, I like it!

Glad that C is moving on to what, we all hope, will be a much better place.

Catch you soon.

Daren
xx

Cupcake Dessert said...

these pictures are just lovely. i am so glad to hear that C has found a new home :)

DES said...

*psst..yea...I'm still around!*

Sorry to read all about the issues with C's home....but happy you have found another! I dread the next couple years with those decisions and really am struggling with some of them. I really appreciate your openess and sharing your lives with us.

Adore the pictures of your time together *big smile*

flyinfox-satx said...

I was pointed to your blog by several other bloggers. I have an Autistic 9 year old who also does not have the capability to speak.

I blog about him at times but my blog is protected when it comes to posts as those....

Thank you for opening up your world as I think it will give me insight to the future....

Casdok said...

Flyinfox-satx
Thanks for visiting. I hope by opening up our world we are raising awareness and things will improve. :)

Seamus said...

It's good to see you in the sphere again.

Your outing with C looks like fun! :)

I hope this new home works out.

Nea said...

Great work 2xC.
I don't like hights or crowds, so good on you both!

Hope the new home gets sorted out as quickly and smoothly as possible.

Stacey said...

You and C look as though you had a wonderful day.

It so refreshing to see that so many people are rallying for "Autism", which in hand will hopefully teach others about Autism.

Good luck with finding a home, my son has been without any kind of education for over two years (due to the special needs education department unable to find a suitable special needs school that can cater for all his medical needs)and sometimes I feel exhausted and if I am honest I feel very alone, in fighting for what my son needs and deserves but when I read your blog it makes me feel that infact I am not alone and there are many people who are going through simliar thing, and who understand.

Well done for opening up the world to Autism :)

Kahless said...

Wow; the London eye looks fantastic.

Hope the new home is fantastic too.

Cheryl said...

I know I responded to this, but wanted to say Happy Easter to you and C.
XXXX

E said...

happy Easter?Spring Casdok.
When is the move. Catch us up soon please

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Danyelle Ferguson said...

Casdok - I love your outing with C! and I absolutely loved your sign at the rally. I feel exactly the same way - ACCEPTANCE is what's needed. There really is no cure (at least not yet.) If some day there is one, great - but until then, we need to focus on accepting and loving them for who they are.

BTW - thank you for coming out to my Queen of the Clan blog!

andrea said...

It's been too long since I visited and I see you've been dealing with difficult stuff. So glad you have the ability to enjoy, too -- and good luck to C in his new home!

dawn said...

Hi girl,
Im glad to see thoings are looking up in the home situation for C , I hope he will gets some peace there and be happy. Your tour of London is great if I ever cross the pond I'm goning to call you. Things are looking up here, my hubby got a job, little league season just started and work is crazy . I miss ya and hope to start blogging again soon. If you ever need me you have my email. Hugs and kisses

A Modern Mother said...

Good luck in the new home.

Highlighting your blog on mummy bloggers this week...

3 Bay B Chicks said...

I am utterly fascinated by your site. I saw your comment on my blog partner's autism post a while back and thought I would check out what you are about. So, so very glad that I did.

To use your words, a little understanding goes a long way. If I could add onto that, your journey as a mother is humbling.

-Francesca

E said...

Too long in between makes us crazy out here. Enough is enough. Update please....

Queenbuv3 said...

Good luck with the transition : )

Queenbuv3 said...

Hey thanks for stopping by my blog! Look forward to reading more of yours. God bless : )

kyra said...

egads! the london eye looks so scary AND fun, both!

what a fantastic post.