disturbing doctors

May 14, 2007

My basic attitude about doctors is that really they are nothing more or less

then mechanics. They are able to help with the mechanics of our

bodies-sometimes. This is not meant in any way to be disrespectful. They serve

a useful purpose, so by Herzberg's rate of measure they get to live. As soon as

Herzberg and his cohorts don't serve a useful purpose no doubt they will be

dumped unceremoniously into nursing homes by children who will enjoy the spoils

of the illustrious doctors' contributions to society and the bank. My own

observations lead me to believe that we glorify doctors and thus many of us take

their opinions to have more weight or merit then that of mere mortals. Who

gives a rat's what Herzberg (or Motley-who wrote a similiar letter that made

Herzberg's sound like nothing much at all) thinks? Not I. It's a mean ugly

world out there for many people (not just the disabled,) and I will navigate it

for me and mine as best I can. I make it a hard and fast rule

to never consider the doctor's opinion for anything other then physical

ailments. I don't consider DS to be an ailment. It is a state of being. Before

Amelia came along my response to people with DS was not all that great. The R

word was in my vocab, I avoided eye contact with people with any disability, and

I certainly was not going to be the mother of a child with a disability. What

is painfully obvious to me now is that it was I who was disabled- in my

attitude. I was definitely morally challenged(no doubt there are those who will

say I still am-I've just moved onto more fertile ground-doctors who think too

much of themselves. I have been on the receiving end of more then one.) There

are qualities to my daughter that I am sure are a direct result of being a

person with a disability. Her unabashed joy at seeing me walk through the door,

the hugs,and the strides she makes-I get all three each and every day with her.

Those of us with these kids are qualified to

talk about the difficulties (which absolutely do exist)of being the parent of

a child with DS. No one else. As far as the toll our kids may or may not take

on the economy? Well once you get rid of the smokers, the drinkers, the

druggers, the obese, and the depressed (all of whom do hard core damage to the

Gross National Product) then perhaps that conversation will be palatable to

some-but hell, none of us will be left! Lastly I am still too much of a

feminist to feel comfortable telling people what to do with their choices but I

read something recently that really spoke to me about the issue of abortion in

general. Why do the feminist feel the need to take their stand on a mountain of

eviscerated babies? Very sharp words, but considering the reckless abandon with

which our babies are thrown on that mountain I have to say I wonder the same

thing. Do I still get to be a feminist if I say this? Yes, I think I do.

Ann (mother to Amelia 7 w/ds and Jake 5)

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May 15, 2007

Ann Masch writes:>>>>>>>>>

My basic attitude about doctors is that really they are nothing more or

less then mechanics. They are able to help with the mechanics of our

bodies-sometimes. This is not meant in any way to be disrespectful. They

serve a useful purpose, so by Herzberg's rate of measure they get to

live. [snip] <<<<<<<<<<

Let me politely disagree. Our experience with doctors has generally

been positive from the announcement by the OB and pediatrician that our

daughter had down syndrome to the present. We have been treated

respectfully and their advice has generally been extremely good. When,

in her late 20's, Jan had a series of real life threatening diseases

from pyoderma gangranosam (so rare it doesn't have a common name) to a

stroke and AML which was put into remission and then recurred, finally

cured by by bone marrow transplant.

Let's step back. Roughly half our kids with down syndrome are born with

heart defects which caused many, many to die young. Today the medical

profession treats most of these successfully and the life span for those

with down syndrome has taken leaps in the past quarter century.

Sure there are doctors not adequately prepared to deal with all aspects

of down syndrome, but that is true of many things since DS is usually

only introduced in medical education in only a few lectures. My

daughter took part in those lectures for about fifteen years at Yale

medical school, showing the humanity of someone with down syndrome.

There are areas of difficulty, particularly in some of the advice given

to prospective parents that can lead to abortion when DS is suspected,

but that is a small part of the really big picture.

Rick .. dad to 34 year old Jan who spent her day as a volunteer helping

adults more disabled than herself. :-)

In honesty, I have to admit some conflict of interest. When Jan was 10,

her Mom started med school. Now there is one more physician who

understands down syndrome, though not as much as Jan.

May 16, 2007

My 2 cents on Drs:

I do use caution with Dr's decisions on medication and invasive tests.

The Drs are well meaning, but sometimes it is best to let things go and

take care of it on its own. I know this doesn't work for everything,

but I just want parents to know they have a choice not to take the Dr's

advice. And you should always have the Drs expand on their advice and

to discuss with you the bad consequences of taking or not taking their

advice. B/C like us, doctors do make mistakes and react different to

problems (too lax or too cautious).

________________________________

From: [mailto: ] On

Behalf Of Rick Dill

Sent: Tuesday, May 15, 2007 11:55 PM

Upsndowns

Subject: re: Disturbing doctors