[tri-med] Re: Panic attacks

----- Original Message ----- 
From: "pam&darrell"
>> i read one
> theory which appealed to me- that people who are prone to anxiety are more
> sensitive to bodily functions like increased heart rate, respiration and
> other symptoms of panic.

For me I think its a case of sensitivity AND control. I know that for me 
control is a big thing. I like to feel in control of me and what is 
happening immediately around me. If I do feel in control then I am OK. But I 
am dependent on others with regards to Alex and as those people phone, 
email, call in person etc, usually with bad news, means I am not in control 
of what is going on in our lives. I hope that makes sense cause I know what 
I mean :-)

>>i am very open about my "psych issues"
> because i think secrecy can be a killer- literally.

I agree - and thats been raised many times on the list - many of us, if not 
most of us have admitted to suffering from depression in some form.

> hats off to everyone who has a surviving trisomy child-i can't imagine how
> much harder it is to live with the fear of the unknown ever day.

And I can't imagine losing Alex..... Its all relative.

>>caregivers
> face terrific stress as part of their daily lives.

That they certainly do!!! More so when you have "double diability" eg 
ethnicity or a minority (which all us rarer trisomies are), poor or 
whatever.

>>tyler changed my career
> path for sure-now i know a bit of how it feels and hope to become involved
> with advocacy, maybe even on a professional level.

Go for it - I was bemoaning in the phone conversation I had that way too 
many "peak bodies" employ people in key positions who have absolutely NO 
empathy or even understanding of what we go through - except from "studies" 
and textbooks. They mean well but in reality they have no idea.

I was talking to this lady about setting up a forum whereby we could get 
together the stories of the minorities, those, like Alex, who don't fit into 
a neat little box. And then present it to the peak bodies and the 
legislators to show the need for services based on NEED - not diagnosis or a 
preconceived idea from others about what we need. She admitted that her job 
was "systemic advocacy" - she wasn't involved with individual children but 
rather large groups of children - like those with CP and what the "majority" 
needed. Her experience? She had worked in the area for 10 years - worked 
with children? no - worked with families? no - had a child with a 
disability - no.........  In short - the system needs you!!!

And I am also reminded recently of a conversation that I had with a local 
charity - I asked what happened to the "day old bread" distribution. 
(bakeries in the area would give their unsold bread at the end of the day to 
charities to distribute to the less fortunate)

They said that they didn't do it anymore because they were criticised for 
giving day old bread to the less fortunate, it was demeaning. I bet those 
comments did NOT come from those receiving the bread. Sure - we would all 
like fresh bread everyday - but the reality to those who need it? If its a 
choice between day old bread and no bread??? I will take the day old bread, 
especially when it was usually the nice fancy stuff I would never otherwise 
be able to even think about buying!! Heck I will buy bread today - fresh 
bread - but we will still be eating that in 2 or 3 days time.......

"We come to love not by finding a perfect person, but by learning to see an 
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 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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