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[IP] Re: Kids and pumps and camps

In a message dated 07/29/2000 4:19:39 PM Eastern Daylight Time, 
email @ redacted writes:

<< Mary:
 I must take exception to the cavalier attitude which I feel is displayed in 
 your letter, though not limited to yourself.  "Little talks" with student 
 nurses and other so called medical personnel are no replacement for actual 
 service education administered by "trained" and "qualified" medical 
 specialists.  You certainly do not want your surgeon performing an operation 
 on you or anyone else after a "little talk" with another doctor.  Until 
 everyone responsible for a child with diabetes (pc) takes the out of home 
 care of these children seriously, and DEMANDS that all out of home care 
 givers, be they camp counselors, teachers, school bus drivers, etc. be 
 properly and professionally trained, the children will remain at risk.  
 Unless you yourself are a pediatric endocrinologist, CDE, or some other form 
 of health care provider with exceptional knowledge of type I diabetes, these 
 little talks, though helpful and anecdotal, are probably insufficient.  If 
 all the parents of children with diabetes stood together and DEMANDED the 
 best for our children all the time, and made waves when they had to, and 
 stuck together when one child stood alone, there would not be stories of 
 discrimination, or of children who were not allowed to participate.  We must 
 all stand together on these issues, and insist on the highest quality of 
 for our children.
                                                      Peter/ Jake's dad
 - ---------------------------------------------------------- >>


I apologize if you took offense to my letter, There is nothing cavalier about 
my attitude regarding pumps or diabetes. I am just trying to state that 
sometimes fighting before you've tried a more positive approach can backlash 
on our children and do more harm than good..I also stated that I've been 
known to put up a pretty good fight in defense of my children's needs when I 
have to.

Those "little talks" with the student nurses actually were 15-30 minutes 
long, in adjunct to a training course that was offered by a CDE for all the 
staff at camp. I have been dealing with pumps and D long enough to give them 
a parents perspective. I NEVER said I was doling out medical advice to them, 
only trying to make them a little more compassionate to our children's needs. 
I've worked in the medical field myself and have heard enough horror stories 
to know that student nurses need to learn to listen to their patients' needs 
early on in their career to be the kind of nurses that would make their 
profession proud. They had never been exposed to insulin pumps before and 
knowing the ignorance of the medical profession in regards to pump therapy, 
simply gave them an overview of what was entailed. The whole purpose of this 
camp is to enlighten the community(it is open to non-d kids, too) and teach 
the children some normalcy. 

You have no idea how hard or long i have fought for my children. Speaking 
from THAT experience, it is far better to try to fix problems in a positive 
light in the long run. I have seen too many people have negative attitudes 
towards my own children, just because I went about things in a way that set 
them off. And, in my opinion, I would never force people to care for my child 
without making sure they are comfortable with what I am asking. You are only 
asking for trouble for your children and setting up roadblocks for any future 
child with a disability that they may encounter. Eliminating ignorance takes 
a lot of work(and work has never scared me).

You can "DEMAND' all you want and get things the way you like, but you don't 
live at school with your children, and teaching their teachers, nurses, but 
drivers, etc, what a day in the life of D is like will be far more 
enlightening for them than any strong arm tactics ever will be. I've been 
where you are and have wanted to pull people's hair out, (and have) and all 
it got me was some very negative responses to all my children that only hurt 
them. I wasn't around for the daily repercussions to my demands, but they 
were. I was right in what I was demanding, but people's defenses were only 
put in high gear, making it very difficult to accomplish anything. No one was 
happy, especially my children. ANd for me, my children are and always will be 
the bottom line.

If you wish to continue this discussion(which seems to be taking a personal 
bent), please email me off the list.

Take care and good luck with your son,

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