Fight or Flight

As the parent of a medically complex/disabled child, my scope of advocacy is wide-ranged.  Yet I learned early on that I can't fight every battle if I'm going to survive the duration of this journey.  Because Jack is a medically fragile kid, his medical needs trump everything else and that is where I focus my energy.  As a result, I made the decision years ago to forgo battles with the school district despite the fact that they fail miserably when it comes to meeting Jack's needs.  As some of you know, I got so fed up with the school district several years ago that I withdrew Jack completely from school and he was considered "home schooled".  I enjoyed the respite from everything IEP-related, including the consistent failure to implement the IEP and the b.s. excuses.  After a three year hiatus, I decided to give school another try because Jack was going to be in junior high - new school, new people. Unfortunately, the same school district.

Under the IEP signed in May, Jack is supposed to have a teacher who comes to the house 4 days a week, 1 hour each day.  The new school year started on Monday for our school district (we are modified year round and the kids only have 7 weeks off in the summer).  Monday came and went and no teacher showed up at the house and I didn't hear a word from the school to let me know what was going on.  On Tuesday, I emailed the special ed coordinator for Jack's school asking her why no one showed up the first day of school and her response was "I am in the process of finding a teacher.  I sent out another request to the district last week and am waiting to hear back. I will keep you in the loop and let you know when I hear back."

So, was she going to keep me in the loop before or after I contacted her to find out what exactly was going on?  And why is she just now in the process of finding a teacher?  And, more importantly, why does she think it's okay that Jack's IEP says he will have teacher four days a week/1 hour a day and that's not happening?  Apparently, our school district just likes to sign IEPs for the hell of it.  This is their M.O.  This is exactly the reason I withdrew Jack from school four years ago because I cannot stand their don't.give.a.crap attitude.  They don't care that they are not in compliance with the IEP. What's my recourse?  I can file a complaint with the Department of Education and they will be found in non-compliance with the IEP. An order will be issued directing them to make up the hours and the order will be ignored just like it was in the past.

I'm angry and I'm expending energy I don't have.  Do I walk away again?  Do I fight or flee?  When it comes to Jack, the fight or flight response varies depending on the issue at hand.  Right now, I'm fighting to make sure all of Jack's medical needs are met with respect to the kidney stone/GI/pain issues.  I'm not sure I have the fight in me to take on the educational stuff right now, especially because I know if I took this to the highest level again, it won't change a thing. Part of me wants to fight this on principle alone.  The school district should be called out for violating Jack's IEP.  On the other hand, I'd rather just take flight and not deal with it.

Today, a parent on the Facebook page for the school that Eric attends responded to a post about the buses not having air conditioning and breaking down all the time, with a comment that "Transportation is last on the list (it seems) for funding." I had to walk away from my computer to keep myself from responding that, "no, special education is the last on the list for funding!" I expect that they wouldn't get it even if I did say something because in their world, a hot school bus is a big deal.  For some reason, the fact that Eric has to spend a half hour on a hot school bus isn't at the top of my list of concerns.  He's getting an excellent education. Our school district has funneled a lot of money and resources into the gifted program Eric attends.  It's a unique situation I find myself in -- having children at both ends of the spectrum receiving the best and the worst of services from the same school district.

In any event, I'm taking this weekend to ponder my next move and I'll be pondering it in the quiet of my friend's parent's condo up North where it's cooler, quieter and where I'm getting away for a girls' weekend.  I'll probably be doing a lot more drinking and sleeping than pondering, but that's okay too.

Jack is doing well - still having a few episodes of pain and distress, but not nearly as many as before.  At this point, we wait to see the nephrologist to find out what the plan of action is.  Thanks for checking in.