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

----- 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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