[tri-med] Re: pneumonia/intubation/futility?

please remove me from the list!!! This is the thire time i have asked!!!!
----- Original Message ----- 
From: "Jocelyn" <jknowd@xxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Sunday, January 28, 2007 5:22 AM
Subject: [tri-med] Re: pneumonia/intubation/futility?


> Please don't "ouch". I wasn't offended at all. I just marvelled that
> he could formulate and ask the question in the first place. I'm just
> so glad I didn't de-value him by mis-interpreting the question, ie
> that he would be thinking of "special" as "better than."
>
> At 12:33 PM 28/01/2007, you wrote:
>
> >----- Original Message -----
> >From: "Jocelyn" <
> > >> "Jocelyn, you know how I'm special, (yes) well
> > > is Tess more special than me?" I had to pause to think for a second,
> > > was this his way of asking about Trisomy 18, so I decided to give him
> > > the benefit of the doubt,
> >
> >Ouch - Yes - you were right "special" is his way of saying special needs
(I
> >prefer that to retarded and he never understood what special needs really
> >meant). These days he understands what the T-18 is and means though.
> >
> >In reality its his dysphasia / dyspraxia thats showing - some understand
it
> >better if you equate it with a person who has had a stroke (he hasn't
> >though!!) He knows what he means and wants to say but has trouble finding
> >the right words and sequence to say it. I laugh and get frustrated
because
> >if something can be said in two words he will take 200.
> >
> >A typical example was last Friday - he was doing the parking at our local
> >Australia Day festivities again for the scouts. All he had to say was
"Its a
> >gold coin donation for parking - please don't park on the left hand side
of
> >the road or on the soccer field." Even after the first thousand cars (and
> >therefore a 1000 corrections) he was still struggling with that sentence.
> >The words his mind chose were far more complex and frustrating for all
> >concerned. He understood perfectly though what people were being asked to
> >do!!! His mind just needed to add all this extra stuff in the wrong
sequence
> >(eg "Its a $2 donation or a $1 or whatever you have. They are playing
soccer
> >so don't park on that side of the right or on the soccer field because
> >people have to get out and because they are playing soccer your car might
> >get brokenso don't park on that side  (huge pause) the left, please don't
> >park on the left)
> >
> >Life consists not in holding good cards but in playing those you hold
well.
> >                                             -- Josh Billings
> >
> >Keep Looking For Rainbows!!
> >    _--_|\
> >  /Karen \
> >  \ _.--._ /
> >           v Karen, Mum to Alex (12 years, T-18 Mosaic)
> >http://members.optushome.com.au/karens
> >
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> >
> >
> >
> >
> >--
> >No virus found in this incoming message.
> >Checked by AVG Free Edition.
> >Version: 7.5.432 / Virus Database: 268.17.8/649 - Release Date:
> >23/01/2007 8:40 PM
> >
> >
> >
> >
> >--
> >No virus found in this incoming message.
> >Checked by AVG Free Edition.
> >Version: 7.5.432 / Virus Database: 268.17.8/649 - Release Date:
23/01/2007
>
> Jocelyn, Wife to Frank, Mother to Ian, Gillian & Susan. Maker of
> quilts, singer of songs,
> Nanna to Carly 19, Mathew 18, Ashleigh 17, Alex 14, and Tess nearly
> 10 years old with T18.
> also step Nanna to Carrie age 19. & Great Grandmother to Eli, Jonas &
Escha.
> Living in NSW, Australia
>
>
> -- 
> No virus found in this outgoing message.
> Checked by AVG Free Edition.
> Version: 7.5.432 / Virus Database: 268.17.8/649 - Release Date: 23/01/2007
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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