Thursday, 4 March 2010

C Spoke!!

Apparently!
After listening to high pitched oooooo’s and eeeee’s for 21 years I didn’t hear C's first words!! ‘Allegedly’ 1 member of staff heard C say... ‘hello’! Not only that but then when offered a choice of DVD’s he said ‘that one’.
I’m still trying to get my head round it! Did she miss hear? Was it wishful thinking on her part? I don’t know. But until more than one person hears C say something (if he ever does again) am trying not to get too excited!! But I never dreamt that his first word would be hello!! Very polite!

I was very honoured to be part of the editorial team for the Autism Strategy. And was excited to see what they had done with it when it was finally published and sent out on March 3rd. But I must admit to being very shocked - pleasantly so when I opened it to find a photo of C on the front page!
But this photo was taken at a not very fulfilling or rewarding time of his life. Some of you may remember when he was in his archaic first home they framed and sent me this photo after I had made several complaints about his treatment, (I actually blogged about this very photo at the end of this post back in 08!) I think they were trying to show me he was happy. So it doesn’t bring back very good memories.


But that aside I think the autism strategy is a good foundation to build on. Health and social care professionals and the public sector (i.e. the Police) will be given training in autism. So will depend largely on how good and extensive this training is. And local authorities will have to include autism in their planning of services.
The CQC have published their first yearly report on the state of health and adult social care in England. State of Care. Together with their new regulations which are based on Human Rights and with the Autism Strategy things are looking hopeful.

I wonder what C will say next?!

86 comments:

Jen P said...

how exciting! He looks so sweet in that picture despite the circumstances.

very good first words!! (neither have 4 letters!) Bet it makes the momma proud! Keep us updated on the vocab!

congrats all around!

Joeymom said...

Holy moly! Chat it up, C! :)

Club 166 said...

I was very honoured to be part of the editorial team for the Autism Strategy.

Well, no wonder everyone is so pleased with the report! Good for you. And good for all of us.

Joe

CrackerLilo said...

I hope it's not at all wishful thinking, and I hope C speaks again--lots--and in front of you!

r.b. said...

Good news!!
Sorry--but I can't help but think he must have really wanted that CD!!

kristi said...

Wow, that is amazing!

JoyMama said...

Congratulations, both on the words and the report! Amazing, both you and C.

It's so interesting how a photo can tell a very different story when you put it in context.

And -- the words make me think of my own blog title, Elvis Sightings. Words that come out of nowhere, so unexpected that you check yourself if you really heard them... but they're real, all right. No matter how long it takes them to appear again.

VAB said...

That's so cool!

mommy~dearest said...

Congrats on Autism Strategy, and WOW regarding C! I'm beaming (but not overly-excitedly ;) ) for you. Imagine how shocked I was when that appeared in my feed reader. Lol! Way to go!

Anonymous said...

Most excellent :-)

- hj

Beth said...

Oh, I do hope you are the one who hears C speak next!
I'm sitting here smiling - can just imagine the huge smile on your face!

Akelamalu said...

Oh wouldn't it be wonderful if when you visit him he said Mum! I'll keep everything crossed m'deario. x

The Green Stone Woman said...

I hope C speaks again soon in your presence. Wouldn't that be the best reward?

jazzygal said...

That is fantastic Casdok! I believe he did say those words. And that picture does look great (even if it saddens you, understandably so) he does look happy!

I too hope YOU get to hear the NEXT TIME he speaks ;-) xx Jazzy

DJ Kirkby said...

That's because he's a clever, happy and settled young man! You knew his new home was a good one. One day he'll say "Muuuuum!" in THAT tone of voice, you know the one you can see when you're boring him :)

p.s. erm...word verification is 'fackr' and yes, that might be his next word. he is at 'that' age after all :)

BenefitScroungingScum said...

Go C, and go Cas, can't wait to hear his next words!! BG Xx

Working Mum said...

"Mum" would be a good word, wouldn't it? I'm so pleased, I hope you hear him speak soon. He must feel safe and secure in his new home if he feels able to speak. Fantastic news.

The author said...

It is not unknown.

Wait and see :)

Suzanne said...

WOOOOOOT!!!! Even if I didn't believe C spoke, I'd still be pleased that someone who works with/for him believes in him. Offering him a choice and all. :o)

lisadom said...

Our Adult nephew Eoin is functionally non-verbal and mainly uses whoops and squeals along with his picture exchange system.
But my husband was over in the UK recently and they went out, and heard him say "Pub" when he wanted to go out for a pizza (a gastro pub that does pizza)

So I say C did speak. And appropriately too xx

Jayne said...

I'd like to think C did speak, after all these years.
What was the dvd he chose, by the way?

Jen said...

Keep us posted on C talking, it would be so exciting:) Jen.

Green-Eyed Momster said...

I'm so happy! When I saw the title of your post in my reader, I came right over with goosebumps!

Words fail me right now about the picture. He sure does look handsome in it though. Focus on that! Congrats! Please tell C "Hello!" from me!
:)

I'm sorry I haven't been around much lately. I'm beyond busy and trying to find a balance.

Hugs and love,
T

Looking for Blue Sky said...

It's fantastic news - and surely it must be true. Why would anyone make it up? News like this gives great hope to all of us with non-verbal children, just wishing you many many more words :)

Warty Mammal said...

Way to go, C!

Petunia said...

What amazing news :) That has just put the biggest smile on my face. Go C xxx

Ron said...

Hello Casdok!

Applause...applause...applause!

OMG...I'm so excited for you! And for C too!

Can't wait to read what he says next!

You GO, C!

Love to you and C, dear lady!
XX

secret agent woman said...

I hope he speaks soon in your presence so you will be able to celebrate it personally.

Cheri said...

I think C spoke too. I hope the girl made sure he knew she heard him speak. It takes so few times for a person to make the association between making a sound and someone else finding meaning in that sound.

It didn't take my son as long to speak - but I was just as excited when he finally did none-the-less. Now he doesn't stop ;)

Get Off My Lawn! said...

Wow. Containing excitement. btw, I am glad every day that you continue to be an advocate for your son and for everyone else who will benefit from improved services. Someone needs to.

Mrs. C said...

*awed silence from Mrs. C*

Jeni said...

Truthfully, I don't think I have to say this to you but don't ever give up on thinking that he may have said those words -or that he may someday speak again. My aunt's only child was born with many birth defects -physical issues, cerebral palsy and severe mental retardation too. My aunt pushed like you wouldn't believe to try to secure any and every type of therapy she could scrounge for her daughter. And one day, one of the therapists working with her got my cousin to say something -it came out as "Um-ma" but the therapis -and my aunt -both thought it was my cousin's attempt to say Mama and from that time until my aunt passed (2 years ago this spring) she referred to herself around her daughter as "Um-Ma!" That happened about 30 years ago at least but my cousin was probably in her late teens, early 20s at the time anyway -she was 52 last month and has learned a whole lot of things that the doctors in the late 50s and early 60s told my aunt then never to expect her to learn ANYTHING! I can understand your trepidation about believing this to be true, but let's hope just for the sake of hope, that it was really said and heard correctly!
Peace.

Tera said...

wow! great news...on both fronts! i hope c's words come again and then while his mama is present. what a gift words can be.

Tanya @ TeenAutism said...

Wonderful, amazing news! It sounds like he's in a very positive, supportive environment, which is also wonderful. Love to both of you.

Debs said...

How exciting that C spoke. I'm so pleased he's much happier where he lives now.

rainbowmummy said...

First of all re e mail, I'm sorry I didn't recognise the pic from "that" time :(

Also as for the speaking, well I'll not get too excited or you or with you. The next comment won't be mine.......

rainbowmummy said...

OMG!!!! OMG!!!! OMG!!!!!!! OMG!!!! OMG!!!! OMG!!!!!!!! OMG!!!!! OMG!!!!! OMG!!!!! OH MY FREAKIN GOD!!!!!!!! AAAAAAAAAAAAAAAAAAAAAAAAAAAA!!!!! *happy dances!* aaaaaaaaaaa!!!! OMG!!!!!! OMG!!!!! OMG!!!!!!!!

rainbowmummy said...

That wasn't me, it'll say it was me, but it totally wasn't. Honest.

Elizabeth Channel said...

Wow--that's so stunning and wonderful!

Paulene Angela said...

Reading this post reminds me that life is beautiful, C spoke, C SPOKE xxx, wish I was there to celebrate.

((( Virtual hugs )))

nitebyrd said...

How incredible and wonderful!

Congratulations on being part of the editorial team, they couldn't have chosen a better person.

Honeysuckle said...

That's really exciting. Like others have said, it would be great if he could manage 'Mum' in the not too distant future.

jess said...

hope

faith

belief

Maggie May said...

Thats positive, exciting news. I hope that he continues. Might just be the beginning.

Nuts in May

Kit Courteney said...

I was just checking back on friends' fb statuses and saw yours. Had to come straight here and read!

Very, very, very delighted. And as someone lovely ^up there^ said, how reassuring to know that those with him believe in him.

Here's to the next time :0)

asdmommy said...

Wow. Just wow. :-)

Adoption of Jane said...

Woo Hoo!! Awesome! Is that a helmet for headbanging? I was seriously considering geting Tafari one for awhile but he seems to have stopped (for now hopefully!)

Adoption of Jane said...

P.s. Tafari doesn't speak for me either.. but will spout out a few words here and there for OT or with his ABA... i think thats regular behavior for kids.. do it for everyone else but mom!! LOL @ least he has manners!

Green Girl in Wisconsin said...

Reading this post was a blessing today. How wonderful! Those few words probably mean more to you than the constant stream of chatter I hear from my kids every day. I am SO glad for you and C.

Casdok said...

Jayne, in my shocked excitement i forgot to ask!

Jane yes the helmet is for head banging, not sure that it helps much apart from making people around him feel a bit more confidant.

the mother of this lot said...

Fantastic! The first time I've been here for ages and you've had this wonderful news! And think big - his next words may be 'I love you Mum' x

rachel said...

I'm so happy that C was able to make his preferences known. May it continue!

StatMama said...

How exciting! I remember when you posted that photo originally, and the post you wrote. I'm glad things are better now, and I am really happy for you and C!

starrlife said...

It's great to hear happy news for you and C.! It's great to know that hope has rewards.

Julie L. said...

Am so happy and excited for both of you!! :)

M said...

Oh so hoping you get the hear those words yourself! That they were real, and will stick, and continue.

And keep on with your bad self you're such a rockstar in the world of Autism. <3

Accidental Expert said...

That is so awesome! Imagine what he'll say next?

Autism Strategy sounds like a great organization. And the picture of C is great too. What a handsome boy you have.

Anonymous said...

That is awesome! My son didn't say his first word until he was 16, and it was cat. We never heard anything again until he was 23, not only said cat again, but also said bye and mama. My heart literally almost burst after hearing it all. At 31 he can now say about 15 words. Never Ever Give Up Hope! The severely handicapped CAN still learn, and WILL always amaze you!

Kahless said...

Wow!

Cheryl said...

That is really wonderful. Imagine what could be coming next. I am really happy for you and C.

I know in that photo, he was living in a place that was not a happy place, but it is a great photo of him. Such a beautiful boy.
XXXXX

Amanda said...

thats awesome! :0)

Phil Schwarz said...

Yay C!
I hope that whatever he says gets to be heard, whether spoken or said via AAC!
And yay you, for the Autism Strategy thing!

Corrie Howe said...

I so hope he is talking. And I hope you don't have to wait long to hear someone else confirm or hear yourself.

Crystal Jigsaw said...

I imagine it was very exciting to hear that C had spoken but disappointing to realise it was when when you weren't there!!

More people need to be on top of autism who work in the public sector, there is still far too ignorance out there.

CJ xx

Angela said...

That is great I am so happy for you guys.

Mama Deb said...

Oh, that is just really wonderful. I so hope that YOU get to hear those beautiful words sometime soon for validation. I'm sure he'd say, "I love you, Mom" if he could :)

kathleen said...

just wonderful..

coolkid said...

what a moment, hope you get to hear it and it wasnt a one off, gives me a glimmer of hope for my own little man, hes very similar to c xxxxx

dawn said...

SUPERMOM,i AM SO HAPPY FOR YOU. tHIS IS ONLY THE BEGINNING i CAN FEEL IT. yOU KNOW i WISH YOU AND cONLY THE BEST!!!!!!!!!! oH AND CALL ME GRANDMA

Phil said...

Hi Casdok! Long time no see! Congrats on your work with Autism Strategy and on C's first words. It's nice to see you still here.

MMC said...

Hello, long time, no talk!

It really is a beautiful picture. Despite what was going on his life at the time. As soon as my eyes focused on it, there was a big a smile on my face.

Congrats on your own work with the Autism Strategy. There are so many important issues that need to be taken on - I guess as parents all we can do is pick a few at a time and give it our best.

And C spoke?! How cool would that be? I can see why you are hesitant to believe but perhaps it is true. I wonder what his first words to Mom would be? It felt like I waited forever to hear my oldest daughter (who we found out many many years later is on the autistic spectrum as well as mentally challenged) say "I love you". If and when C does speak to you, something tells me it will be well worth the wait.

(((((Casdok & C))))))

Suburbia said...

I hope, next time, that it will be you that hears him :)

DJ Kirkby said...

Ah yes...I see the bit about the autism strategy now! I seem to have read the first paragraph and then skipped down to look at the picture of C the first tiem I read this! Then skipped the next bit too though I did read the last couple of paragaphs.

Catatab_Tabimount said...

This is amazing news! Especially when you are not pushing your son to speak, rather to accept him as non-verbal. You never know when certain progressions might hit. Just because one may not speak at age 4, it does not mean he or she will be doomed to a lifetime of institution.

Catatab_Tabimount said...

I do not know exactly what therapy was used to get me to speak and work with other kids, but if I could find it out, I recommend it to anyone with severely autistic toddlers.

Kelley @ magnetoboldtoo said...

This post made me squeal with delight and cry.

WHY do you do that to me woman?

Makeup all over my face.

E said...

Except you have of course heard his words for years.
And his hopes and worries and feelings. It's just that now other people are hearing them too....

Beautiful.

marry said...

Blogs are so informative where we get lots of information on any topic. Nice job keep it up!!
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Randy said...

Excellent!

You may need to watch your own language, if you curse like I do. My oldest son knows that the big bad words, including the f- and s- words get attention. Though I must admit he uses them in proper contexts.

Jade said...

I can't describe the internal feeling I had as I read what you wrote. How awesome Jen. How very very awesome. I hope this is the start of something wonderful for you two.

As always, I think about you often and pray for you two daily. Hope you are well.

Anonymous said...

Maybe C has been pranking you all these years and he's really neurotypical.

okasaneko said...

Sorry this is a tad late but I love that C continues to surprise all of us!

Happy day, my friend! I send you and C my blessings from across the miles!

Ana Through The Looking Glass said...

Wow! I really hope that she didn't mishear and C starts to say some more words :)

laughingwolf said...

my guess? he'll say MOM! :)

athenivanidx said...

Oh man, I can't help but think how hilarious it would be.....if next time someone does something that really irritates him.......he says....

f**k this s**t.....

Warty Mammal said...

In case you haven't seen this - thought it was interesting.

"Autism's First Child" via The Atlantic
http://www.theatlantic.com/magazine/archive/2010/10/autism-8217-s-first-child/8227/1/