Last week, Ubergeek and I met with the team at Bean's school to start the 504 plan process.
This is something we have been waiting to get started for a year now.
There is a new principal and a new nurse, so we are already having a better year in those areas.
Other areas are not going so well. Bean is having issues taking a super long time in the bathroom (yeah, she's a dawdler and has a tendency to go A LOT) and she is having a hard time getting her work done (just now starting to get her ratios and basals set so she's not running high or crashing all the time!).
We came prepared with a 504 plan already written, based on the sample one from the ADA, because I knew that I wasn't going to trust anyone else to make sure Bean's needs are met. Unfortunately most of the meeting was centered around the problems that Bean is having with very little regard for her diabetes. No matter how hard the nurse, Ubergeek, or I tried, they just weren't 'getting it' that pretty much all of Bean's 'issues' having either underlying or blatant D connections.
Thankfully, the nurse did finally get across a few D points and was going to be following up with Bean's teachers later that week to make sure that certain things (like making sure she's actually testing before recess instead of just giving Wilma's (her CGM) number and her teacher taking her word for it ~ yikes!) were addressed immediately while we are waiting for the 504 plan to be put into place.
It wasn't a 'feel good' meeting. I went into it knowing that I was going to have to keep myself calm, and for the most part I did. It could have very easily escalated because it was about my Bean and as much as I know she has 'issues' (D or not) and as much as I know that she's not a perfect child (shocker, I know!) I do not like it when other people hone in on those issues and make them out to be bigger than they are, or don't take into account that those issues might not be entirely under Bean's control. We don't allow her to use D as an excuse, but there are times that D is the reason, like it or not.
Later that night, Ubergeek and I were talking about the meeting and I couldn't keep the tears from falling. It's been months since I've cried because of D. I honestly couldn't tell you the last time. But that night I cried and cried and cried.
I cried for my 'smart kid' that is testing second to lowest in her class because of blood sugar issues.
I cried for my 'trustworthy kid' that is being seen as someone who can't be trusted to go where she's supposed to go.
I cried for my 'honest kid' who is now feeling the need to lie about things to keep from getting into more trouble.
I cried for my 'focus and get the work done kid' who now struggles with her assignments because of out of range BGs or 'holes' in her knowledge from missing class time last year because of D.
I cried for the 'involved, supportive mom' that I'm struggling to be now that I'm working and our evenings are even shorter than they were before.
I cried for the unfairness of D to rob my Bean of so many normal things that no other mom or kid has to worry about.
I cried and cried and cried because there was nothing else I could do. And I'm crying again, damn it!
I know that it will all work out.
I know that the 504 plan will help ensure Bean is getting what she has the right to get and I will make sure of that.
I know that we will work our butts off at home to fill those holes and help her succeed this year.
I know that D will again take a backseat and not drive us over the cliff...maybe right up to the edge, but I WILL NOT let it drive us over!
I know that you, my fellow D'rents, have been there and have come out the other side with dry eyes and 504 plans.
I know that the tears will be wiped away and my eyes will be dry.
But, I know they will fall again, it's just a matter of time....