Monday, 17 May 2010

Expectations

C’s best interest meeting to determine his ability to consent for a GA didn’t go as I expected.
It was straight forward and very positive!! Everyone easily agreed that C does not posses the capacity to consent so his human rights have been denied (sounds awful doesn’t it) so we have the go ahead. We will next have a pre op meeting to try and sort out how we are actually going to go about administering the GA (with least risk to himself and others) as sedatives and tranquilizers have little or no affect, you can’t prepare C with social stories or pictures, visits etc nor distract him. And his fight AND flight responses are acute!

It was also agreed that we could take blood to test for various things, But no decision as yet was made about cutting his nails.
I am not at all looking forward to this as we have been though it once before and know how traumatic C (and I) found it. His self injurious behaviour is these days usually brought on by the actions of others (Suit you, sir? - brilliant article - a must read for staff) and this will be one of those times you can’t avoid.

We agreed to use clinical holding techniques with a cut off point if not working. build have produced a code of practice for physical interventions. Am researching other ways to avoid this if poss – any suggestions welcome!

But at least these days they are prepared to give oral care to people with learning disabilities. It is not that long ago expectations were so low and basic privileges were denied. Children were labelled ‘in educable’. LEA’s have only had to educate all children with special needs since 1970. Long stay hospitals are nearly all closed. Here’s a harrowing reminder of what those days were like - loss of individual and social identity, gender identity, family identity to name but a few – and it wasn’t that long ago

Attitudes are changing. We no longer have to shut our children away, or put up with babysitting (of adults and children) without meaning and value. We want the best education not just ‘training’. Opportunities, real choice and respect. Person first and neutral language. Personalization across all care settings. To be free from bullying on and off blog.
We are no longer afraid to rock the boat and ask for more. We want the same rights as everyone else. Laws are slowly catching up and being updated because of pressure as parents and disabled people have much information at their finger tips and higher expectations. We need to continue to challenge low expectations.
People understand the care and treatment choices available to them. They can express their views and are involved in making decisions about their care. They have their privacy, dignity and independence respected, and has their views and experiences taken into account in the way in which the service is delivered.
As of October 1st the inspections that the CQC do of adult care homes will be based on 2 laws:
The law that care homes are inspected under at the moment is the Care Standards Act 2000
this legislation will come out of use.
Which means things will be less process driven and more in tune with person centered approaches so outcomes should actually meet people's needs,

C’s service provider have been great as they are listening to me (and C) and are very receptive. C is one of the youngest therefore my thoughts are different to what they are used to. So my stirring input I feel has been constructive.
C has been stirring too!

The most exciting thing about both these photos is apart from feeling happy and relaxed enough to take his fingers out of his ears – C is doing these things independently and not hand over hand! (I have never seen C press a button before on his own!) Possibilities for Facilitated communication ??? Or i may have to invest in an iPhone with the new Grace app (picture exchange) Great initiative Lisa
But what i would dearly love for C would be to be able to turn his TV or radio on himself (especially in the middle of the night!). And now i feel he is getting there :))
Change can happen

49 comments:

BenefitScroungingScum said...

That's such great news! Well, apart from the finger nails, but it's wonderful to see C looking so happy. BG Xx

Chris H said...

How exciting to see C doing some things with a smile on his dial!

Kristina Hughes said...

Wow - this just makes me think of all the things that people take for granted and how you and C have to fight for every little (HUGE) step. You both sound like you're making amazing progress and the proof is the smile on C's face. Best of luck with the nails.x

Shrinky said...

Well done, and good luck with his treatment. When living in London, my son was exactly the same regards anything medically related, and dentist visits were an absolute nightmare, he had a fully fledged panic attack simply entering the room.

Since moving, we have found a dentist over here who solely treats adults and children with special needs - it took over seven years before he finally agreed to open his mouth to her (but he did, whoo-hoo)!!

C obviously urgently needs treatment, but I can only imagine the trauma you must be anticipating right now - I will be thinking of you and C, and sending all positive thoughts your way.



It

Marita said...

Huge steps ahead! I'm thrilled for you and C. Especially that you had no fight getting approval and now can focus your energy on the how.

Joeymom said...

Check out the leaps and bounds! I hope they let you clip the nails while they are working on his teeth...

Jen said...

It sounds like pretty good news all around- things definitely are changing!

Fantastic news about C being able to push buttons...that opens up a whole new world of possibilities.

Was there a reason that you decided against general anesthetic for the dental work? We've had to do that with my daughter a few times so far, and we may have to go that way with my son soon.

It's definitely not an unmixed blessing either way- we're lucky that so far none of the kids have had any bad reactions to anesthesia.

starrlife said...

I felt more relaxed just looking at those pics of C! I am so so happy for him and for you. You have been such a devoted advocate and loving Mum and you deserve some measure of peace of mind!
And of course I am on board with all of your post!

Mrs. C said...

I was looking at GoTalks myself, but Woodjie is starting to talk a little. The buttons on some of them are nice and big and look easy to push. Woodjie can press buttons but hasn't figured out the TV, either. That would be great if C could use a remote and choose his own shows.

Akelamalu said...

You are making progress and so is C - I'm so pleased for you both. x

bobbie said...

"Change can happen." What exciting words! And that smile of his is just thrilling.

Beth said...

And sometimes change happens when you make it happen – your efforts and love have contributed big time!
(today we begin the battle for our mother’s rights and dignity in the nursing home – I am inspired by all you have done for C in your battle)

Cheri said...

I always get so excited when Zach starts doing something new. I am really happy to see C doing things he has never done before. Huge leaps and bounds!

JoyMama said...

Glorious smile, and what fine progress -- both with the fingers out of the ears and the best-interest meeting (though I can't believe they're waffling about the fingernails.)

Button pushing is a huge gain!

Ron said...

Hello Dear Casdok!

YIPEEEEEEEEEEEEEEE! I am so happy to hear about all the wonderful progress you're making with C!

"We need to continue to challenge low expectations."

Brava! You're so right. And YOU'RE doing it, dear lady. I'm so proud of you!

Great photos! Love the smile of C's face, as he's stirring!

X to you and C!

(((( Casdok and C ))))

Paulene Angela said...

I'm reading and seeing two happy bees here, and rightly so.

Really happy for your continuing progress. Love the Grace app.

Accidental Expert said...

That is wonderful news! I love your pictures. His smile is awesome.

lisadom said...

wow! that is all great news Jen and thanks for the shout out.

I truly wish the hospital visit goes well for you. I know exactly how big a ball of tension builds up inside in preparation/anticipation of the stress involved. And I think C is twice Gracie's size so double that for you.

Boo recently started reacting to background muzac in shopping centres and putting fingers in ears.

I got him to wear a pair of earphones - the bud style. He pushes his fingers into his ears so I though a good soft pair with the right size rubber cover would work and he tolerates them very well.

I downloaded some Randy Newman "Toy Story and other Pixar songs" on the iPhone and he was able to walk tall and listen to them, rather than doing the bend and block his ears thing - which makes it hard to hold his hand in the busy shops.

I have to watch him with the earplugs as he is a chewer as you know, but it seems to have worked so far. I wonder would C tolerate such ear bud head phones if you showed him a few pairs, showed him how you use them, then left him the choice?

I bought the best I could afford, so the sound quality is really good. HMV do a good range.

I got Boo an iPod Touch so he can listen to his music anytime -and I can still get calls. Big help!!

Ps. You are fantastic at wading through all that legislative rights stuff. I find it very confusing and overwhelming. But it is the essence of what we need to be focused on. Well done xx

Maggie May said...

Wonderful news about the finger on the button.
We should NEVER give up on our children.
Good to see C looking so happy.
Hope the nails get sorted out soon.
Maggie X

Nuts in May

Debs said...

It does sound like there's positive changes happening, I'm so pleased.

Glad C is so happy and relaxed.

nitebyrd said...

This is such a positive post! I'm so happy for both you and C. The look of happiness on his face tells more than a thousand words!

Green Girl in Wisconsin said...

What a happy update! C looks happy, too! Healthy and busy--very pleased to read your post and hear the latest.

Petunia said...

Great to hear you're making progress. Fingers crossed you can get his nails cut too. Lovely to see C so relaxed in the pics too xxx

Sheila said...

That is good news, I a happy for you and C...I know that C will continue to progress.

Tanya @ TeenAutism said...

Look at that smile! It's wonderful to read that things are more positive, thanks to your "stirring." Very informative post as well - I checked out some of the links and learned a thing or two! Love to you and C

Lane said...

This sounds so positive.
Wonderful informative post as always and lovely photos of C.

DJ Kirkby said...

Love the photos of C! Also very happy to hear he will be able to get his teeth sorted, I expect he'll feel happier without toothache...if a GA can somehow be administered that is. Good luck. xo

Crystal Jigsaw said...

Yes, it definitely can. You are sounding positive about the future, albeit with the obvious obstacles always to face.

I can't even begin to imagine not educating Amy. Our children have always deserved the best. Full stop.

CJ xx

Mima said...

Just popped by to see how you both were doing, and it sounds like wonderful news! Fingers crossed that someone has a couple of bright ideas for you on the how, and that they let you do his finger nails at the same time. How wonderful to see C's smiling face as he stirs, and button pushing could be a great bonus!

Queenbuv3 said...

Yay! Good luck with getting his teeth taken care of. When we finally got my son's taken care of he had so much decay that he ended up with lots of crowns and fillings BUT he was so much happier. If C has severe decay, the pain could be a huge reason for some of his behavoir issues. Please let us know how it goes and if he has a change in his behavoir.

BTW-The only time I restrain my son without guilt is when he has to get dental/medical procedures done. However, we ALWAYS try to do everything we can think of to do what he needs without restraint. It is a last resort. It is so hard. You want your child to trust you and not build up a wall of fear when it comes to having to go to the dentist or doctor. But sometimes you do whatever you have to do because their health needs to be taken care of even if it means restraining them. Best of luck : )

So happy for both of you to see these photos of him doing things for himself and learning some new skills! I hope he continues to make progress. It is never too late for ANY of us to learn and grow : )

okasaneko said...

I love C's smile- it is so honest and trusting.

I wish only the best for C and you, dear friend. I send you prayers and good wishes- that his procedures go well and that he responds to these procedures without adverse consequences. More smiles to go around, please!

kathleen said...

Love the photo's and his body language..the way he is leaning on his elbow..relaxing..just lovely to see. Thanks for sharing his pictures..I too hope that his proceedures are scheduled and done in a way that is positive for everyone..

Suburbia said...

Yay for change and progress :)

Elizabeth said...

Wow. The finger on the button -- just wow. Thank you for visiting me today on my blog and commenting. I look forward to reading yours. It's so rare to "find" someone whose child with special needs is older -- I feel like the senior, sometimes, in all these forums, so this post today was especially resonant for me -- especially given the growth and hope you have for your son --

Palm Springs Savant said...

thrilled to read of C's progress. I do enjoy following your updates, it is truly a unique insight into a world of which I know very little. Thanks for being to diligent and thorough all these years.

Julie L. said...

It's so great when things go better than expected. I'm happy for you and C. I remember your post about being able to see the light at the end of the tunnel. This post made me think of that and how hard you have worked to be able to see that light. Although I realize a mother's work is never done, seeing pictures of C is evidence that your hard work to get him the right home, services etc. has paid off. I hope that you'll continue to see the benefits long into the future. You're a inspiration to me, and I'm sure to plenty of other parents and people in the autism community as well. : )

Cheryl D. said...

Change can most certainly happen! I'm a huge believer in that.

Ellee Seymour said...

What is so impressive is how very hard you are working for C. Nobody could do more. I'm pleased to hear all is well with your service provider.
I can recommend an iPhone, btw.

Kristen from Shrek Toys said...

Hey! Just came across your blog actually looking for info regarding the new shrek movie but was delighted to come across your blog as a woman with aspergers, it was warming to my morning to read about C and your perspective. hee it does make me wonder if you've been getting a whole bunch of traffic from the movie though.

Thanks

TherExtras said...

A long list of positives! With good prospects for more - wonderful!

Barbara

Honeysuckle said...

Brilliant progress - it makes such a difference when people will just listen and take on board your ideas and expertise, doesn't it?

SnoopMurph said...

It was heartening to read about C's progress and I am sure more positives are in store for him and for you.

I love the smile while he is stirring!

kim said...

hoping things are well there. Sounds like some positive things about the pushing buttons on his own and etc.

Cheryl said...

Seeing those photos' of C looking so relaxed and pushing a button, must make you feel so proud and happy. The possibilities are really opening up and are endless. People are listening to you, the one who knows him best, and he is responding to the care that you know he needs.

It is so nice that you can go to a meeting and it doesn't have to turn into a big battle, with "professionals" who don't listen or think they know better. I think you are amazing.
XXXXXX

StatMama said...

Such a wonderfully positive post! SO great to see C smiling!!!!

Anonymous said...

He really should have his nails cut. It would help him push buttons more easily and short nails are better in terms of hygiene and safety. What benefit does he get from having Fu Manchu fingernails?

Kim (frogpondsrock) said...

Thanks for the update. It is lovely to see C looking so Happy in the photos. xx Kim

Jade said...

What an great post Jen! The pictures of C had me grinning along with him :-) And if I'm not mistaken.. His nails are short!

I am so glad that this new center is listening and working with him and yourself instead of working based on THEIR agenda.

And how are you? How's Jen asside from the land of Autism? How and what have you been up to for YOU?

You are thought about often, even though I don't get by here as much as I would like.
(((hugs))

Mistress B said...

Wow! that all sounds so positive. It must be such a relief to feel like you are making headway :) I'm so pleased for you