[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
>
>
>
>
>--
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>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

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