Re: Pancreatitis in the Schools Program

[Guest guest]

KARYN,

Up here in Bangor there is no understanding of children with chronic

disorders other than the obvious ones, Cancers CF Cerebly Palsey etc. You

know the obvious ones.

Cassie is not the only child I have know that the school system hear does not

understand the concept of there illness.

When we were in Portland they seemed much more eager to provide services of

her even though she was in the hospital, including tutorial services. The

director of pupil services here is scared *%@# of me and thinks Cassie's

pancreas is a ticking time bomb waiting to explode. Last year they would not

let her participate in gym class even though her Dr. cleared her to

participate, even questioned the credentials. It took me form mid December

last year to March 11th of 2002 to get her a tutor. Now that she has one, 2

hours for every day she misses. And she still gets messed around by the

school system. If she's there for home room at 8:15 then she's count for a

full day. Not counting the full days she was home with pain or in the

hospital she averages coming home 3 days a week. She's only had 3 hours of

tutoring this year and that was from her hospital stay in September.

She says some of her teachers are not kind to her about her CP they tell her

she's faking. She looks really good for a sick kid. Too DAMN HAPPY! That's

just my Cassie, though she is one hell of a complainer she's a happy one.

Always has been. Both my husband and I look at her and all the millions of

others suffering the effects of CP as heros. Cassie is our #1 hero! She get

up every day smiling and happy to be alive. She goes to school as long as

her pain is not to bad. Remember she gets no pain killers cause she's only

12, and tries to make it through her day. By the time she decides she can't

take it any more and I pick her us she's glassy eyed and either as red as her

hair or as white as a corpse. But she's faking!

School nurse is a joke. Has made no effort to help out in any way with

educating those around her. We try to educate them and they treat us with

even less respect than her Dr.'s do. I't's a no win situation. Don't tell

met o get involed, I call

thirteen meetings an a 4 month time period involved. And it has started all

over again this year. !st day back to school we are going to meeting #7 for

this school year and it only looks like it's going to get worse. This

constant battling between the school system, teachers and us doesn't help her

any either. I'll take any thing you might help me there.

It's quite late now, so I'm going to go, I wish you well and a pain free NEW

YEAR. I know a site for kids that may fit into your educational program.

Let me know if your interested. Thanks for always being there. Hugs

Patty in Bangor

[Guest guest]

I don't know if this would be an option, but I homeschool my daughter b/c of

my condition. I use VCSlearn.com which is for here in Ohio, but you might

want to look into it.

Jenise

[Guest guest]

I don't know if this would be an option, but I homeschool my daughter b/c of

my condition. I use VCSlearn.com which is for here in Ohio, but you might

want to look into it.

Jenise