Re: Cassie - ADHD

November 29, 2002

Hello pancreatitis ,

In reference to your comment:

è Add to that the fact that Cassie has ADHD, non verbal learning disorder

and not been on any meds for it in over a year. Her GI says Since ritalin

and concerta are simulants he does not want her on them. They can cause

additional stomache pain as I'm sure you are aware of. Her ability to

control her impuliveness and activity is hard to control when she's feeling

the pains of her CP part of this is her trying to deal with pain and this

adds addtional stress on her and the rest of us too...>>>

Dear Patty and Cassie;

I just wanted to affirm you, Patty, as you continue to work so hard to help

Cassie as she deals with life in general. As a parent of a ADHD child (well

he is 21 now) I realize how difficult day-to-day can be. First I wanted to

tell you that I recently had the wonderful opportunity to meet an artist that

had a stroke a few years ago. My wonderful bosses (architects) are acquiring

jobs that we can give to him as he works towards recovery. In talking with

him I found out he has ADHD and he was able to describe how he sees life. It

is like a kalidescope (one of those round tubes that you see different colors

as you turn it) in that he sees things in an everchanging light, and isn't

always able to focus on one thing. BUT we have found that although he see

life " differently " it is an interesting way to look at life. For example, he

sent me a Thanksgiving card he drew from the turkey's perspective - " You

don't want to be a turkey - eat duck... " . He has to call me when he thinks

of something so he doesn't loose track of it, and I keep notes. He is

upfront about being different and that is okay.

For Cassie, please know that everyone is unique. You are a special person

and the important thing to remember is that you are important, there a many

people that are working towards a cure and a help for your pain. I know

there all PAI members wish you the best, and want you to take one day at a

time. Use your uniqueness to live each day as best you can. As for my son,

we (and by that I mean my husband, me and my son) worked hard towards his

graduation. It is okay that you learn in a different way. Try to connect

with the teachers that are willing to help. If not for the persistance of

two wonderful math teachers, Kenny would not have made it to graduation, but

they bucked the rules, gave him his finals verbally, and wrote letters to the

Board of Education to give him his math credits.

As for today, Kenny is 21 and working with his dad (as brick masons). He is

learning to get up every day (yes - at the last minute, but he has worked out

details such as having his work clothes in the bathroom to facilitate

dressing, has things for lunch in a line on the kitchen counter, and keeps

his phone, etc. by the front door so he can run to the truck as his dad is

turning around in the driveway). As for Kerry (my husband) he has learned to

give Kenny one task at a time...

I do hope your family had a good Thanksgiving and Cassie, may your pain be

less and may you learn to live life with joy in your uniqueness,

Gail West, Indiana Representative

Pancreatitis Association International

November 30, 2002

Gail,

Thanks so much for your words of kindness. Yes our Cassie is a very unique

and special. We learned a long time ago that she learns different. We that

is Mike my husband, Cassie, my 3 yr old son and me know that the problem is

everyone else.

When Cassie was in kindergarden they told me she could read, I told them she

was memorizing, no-no she can read. First grade comes and she still can't

read. It's been like that since she started school.

When she had her 1st bout of pancreatitis she was in 5th grade. The

resource room teacher that she worked with made her a huge car that all the

5th graders and teachers signed. She visited with her in the Hospital and

Cassie felt real good about achool still.

Last year 6th grade she was sent to middle school and main streamed for all

her classes. We were told anytime we wanted her back in the resource room

just say so. Her first attack last yr was in Sept. 6 weeks late another and

2 weeks after that another. Followed by an ERCP in January that turned into

a 7 day hospital stay that was 3 1/2 hours from home. I asked the school for

help with a tutor on early December and did not get her one untill mid March.

Oh it was a mess. We only got her help because I wrote her teachers a

nasty letter and sent a copy to the principal and the superintendent. Over

and over again I caught them in violation of IDEA and Section 504 of the

education act.

The other issue we had with them is gym class, they didn't let her

participate at all even though her doctors repeatedly sent them letters

telling them it was ok . They thought she had a pancreas the size of a

football waiting to explode. Everytime we tried to educate them on the

disease they wouldn't listen.

Add to that the fact that we are trying to teach her to be responsible for

the things she forgets or does and forget it. I'm constantly being berated

form the school nurse for not leaving my job to bring her lunch (she no

longer takes enzymes, they didn't help her at all). Even though they have

reports from her PCP and her psycologist State that we should do so. And

things are kind of crazy.

She has several teachers that are not very supportive of her illness and

really lack any compassion for her.

I'm glad your son is getting on with his life dispite ADHD. We try to give

Cassie very positive role models who had ADHD so she knows those with ADHD

can succeed. Abe Lincoln, Einstien, my PCP ( he's her friend's dad) etc. We

also understand that she learns differently but that does not mean she can't

learn. I have this wonderful poem that ill send you some time about being

learning disabled.

Patty in Bangor, me

November 30, 2002