Hoping to someday find M's brother adopted in the U.S. -
Myckola Oleksandrovych Markov - 8/26/2003

Thursday, January 8, 2015

A First

Because this is "The Johnson Journals" I want to write down our real life journey.  One day I want to print this blog and have it made into one of those cool blog books.  So its important to me to document what our life has really been like.  Not just the "fun" things.  Mostly the past year has been a lot of work.  So I write posts like these to be real.  I write with sarcasm because its how I deal.  Everyone has to find a way to cope with stress.  My way is to make it funny.

Moving on...  

I had an IEP meeting today.  Like when do I not right?  And to be honest, I was just not expecting good things.  I've grown so accustomed to always being disappointed.  I didn't even stay up past 11pm last night.  I didn't even pull M's file out to look it over last night.  I was horrified at myself, but to be honest I was just so tired of it always being a fight.  And for what?  Here we are… having another meeting only this time with lawyers.  I mean, is this your idea of fun or what!?  Its either going to go well or its not.  What I do doesn't really seem to matter anymore.

The meeting itself dragged on.  We wanted several of the goals revised and just oh.em.gee. it took for.ev.er.  Its hard to describe an IEP meeting.  I feel its a lot like a political debate.  You get to hear a dialog on what wonderful strengths your child has, and then you get to hear about how terrible other things (like her walking because I really was totally unaware her knee hyperextended!) are.  People read things out loud (I just hate this part more than fingernails on a chalkboard.  Its just painful.)  Then everyone avoids answering questions about how help the situation with actual facts and instead talks even more about what they are doing right with all of the other children.  The words "research based programs" "laws" and "standards" "making progress" and "according to our evaluations" are tossed around coupled with "we don't do that here" and "what we are suggesting is the most innovative thing since we put a man on the moon."

I broke my toe over Christmas break.  For some reason that little sucker was in mega pain during the meeting.  Just keep that in mind because it was on my mind the entire time, and it was annoying just like this sidebar to the real post.  I was *this close* to removing my boot in the middle of the goal typing saga because just, OW.  But I sat there and dealt because moms deal; honestly the meeting was more painful than my broken toe so the distraction was helpful.

Anyways back to the story.  M is dyslexic.  M needs a reading program for dyslexic children.  She's struggled for years, and we finally know why now.  It seems simple enough, right?  Teach the dyslexic kid to read with a program mean for dyslexic kids, right?  But do they have a program for that?  Well there was no one there to answer that question.  Is the program they are recommending for her a program for dyslexic kids?  Well it doesn't have a name?  Really?  Except that it does, just you won't tell me.  And actually no, when you say that other dyslexic kids are in that program, that doesn't cut it.  While I do not doubt that other dyslexic children have indeed been put into that program, its not working for MY kid and that would be who we are discussing right now.  My kid.  And again, I'm sorry (actually I'm not), but PROGRESS does not mean she is not entitled to a program more suited to her needs.  A kid with CP can make progress walking, but AFOs would make that process so much easier and less painful.  Do you see where I'm going with this?  Progress doesn't mean she doesn't need more help.  You wouldn't deny kids with cerebral palsy AFOs because they are making progress when everyone knows that the braces are necessary.  So don't deny my child a reading program just because she's managing to make some minimal gains in a program not suited for her disability.  Duh.  Why pay thousands for an outside eval when you won't take the recommendations in it seriously?  Its like an alternate universe in those IEP meeting rooms, I'm telling you.  Bring an oxygen tank.  

So yeah this is how the meeting went.  I absolutely was not signing that IEP in its entirety.  AND I was told we'd have to have yet.another.meeting.  to discuss the same things over again, this time hopefully with someone there who could answer the questions!  How fun!  More unnecessary meetings!  I was totally planning my homeschool curriculum on the way home because how could I do worse!?

After the meeting, I immediately left and went home to do my own research on the Read Well program as well as send some emails asking questions to a few knowledgable people in high places.

An hour later I got a phone call from someone in Central Office.  I was profusely apologized to for how the meeting was run.  Apparently there were instructions to be more helpful, offer suggestions, and have more knowledgable specialists there to answer my questions.  But um, there was not.  Why?  Well isn't that the question of the year, hmm?  I'm sure it was once again a "misunderstanding."  It always is.

The good news of the day is that the head person for SPED has taken over my kids' cases.  She'll be running the meetings from now on.  There is nothing about the former person being replaced to make me sad.  Bless the wasted days.  Just bless it.

Is this the start of new forward progress?  I have no idea.  It could be one more song and dance like I've grown so accustomed to.  I won't even get hopeful yet.  But for today, even if its just for today, the apology did mean something.

Now, don't you just want to attend an IEP for yourself to see how much fun it is?  You'll find all sorts of unpleasant things like wart removals or DMV visits so much more tolerable afterwards.

My husband won the award for best text of the day.  He texted me right before the meeting and said, "Make those lawyers earn their money."  That is why I married him.

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We witness a miracle every time a child enters into life; but those who make their journey home across time and miles, growing within the hearts of those who wait to love them,are carried on the wings of destiny; and placed among us by God's very own hands. --Kristi Larson