Sometimes My Head Is Too Busy And My Heart Too Heavy

I have come to my desk numerous times since I last posted but end up just staring at the screen.


My head is swimming with ponderings about so many things.  When I try to sort them out and categorize them, I can't.  They are a jumble of inter-related bits and concepts that I cannot separate.  They include all things special education, best practice in general, political points of interest that are not working in effective education's favor, poor school administrators......well, you get the picture.  you really do not want to peek inside this head right now.


My heart is heavy on behalf of an incredible friend of many years (and a state away) who is grappling with what is best for her son with Down's Syndrome.  She and I have always gotten each other, but now that we have special needs kids in common, it is an even tighter connection and I love her dearly.  I admire her beyond words.  And as I write today's blog, I realize that is what this blog is meant to be about.  


Let me list my other heart heavy issues and I will return to my Incredible Friend's (IF)  current battles.


My heart is heavy on behalf of Movie Man.  His challenges are great and he surely must be a genius to be experiencing any successes in school.  
I am heart heavy when I watch what has happened to my program in my absence, how ineffective public education can be and is in too many cases. 
The biggest contributor to my heavy heart is my inability to figure out if I should go back to  my old job or cut the cord and move on.


So, back to IF.  She and I met as teachers.  We taught in the same elementary school.  Me as an LD teacher, her as an SLP.  I learned a lot from her.  We were very dedicated to collaborative co-teaching when appropriate and even presented about our findings at our state board of ed conference one year.  It is remarkable that I have not driven her crazy yet.  I am a fly by the seat of my pants kind of gal.  She is much more precise and thorough.  We have differing opinions and practice in some pretty major parenting ways, but we respect each other greatly.  She is a true friend.  What we have in common is our love for our kids, our belief in our kids, our advocacy for our kids.  We understand each other's pain and heartache.  We understand each other's rage and frustration.  We confide some of our ugliest thoughts about parenting special needs kids.  In fact, she is the only one I am completely honest with about the realities of parenting my kids.


Anyway, IF is in the throes of a big battle.  Not only with the school, but I think within herself. This is common among those of us with special needs kiddos.  This tricky balancing of advocating, wanting our kids to be normal, wanting the world to accept them and accommodate them, with what our kids can really handle and accepting their limits.  


This means that we have to abandon (at the very least, adjust) so many of the dreams we had for our kids while they were still safely in our wombs.


So, IF has a 4th grade son with Down's (Delightful Boy).  He has significant communication challenges, sensory issues, health problems, and a really crappy IEP team.  IF has fought to have her son fully included all along.


But it seems she is at a significant crossroads. It seems that the team has reached its potential and limits.  It seems that Delightful Boy has also reached his tolerance level for much of his school day. For whatever reasons.  For reasons nobody on his team has taken the fricking time to figure out!!! There has been no systematic analysis. There has been little to no communication with IF about the specifics of Delightful Boy's behavioral changes. The latest communication she got was that Delightful Boy was passing gas in class at a much more frequent rate than in the past.  


WHAT???  Are you kidding me?  


'And, by the way, Delightful Boy is flatulating a lot.'  So, what is IF supposed to do about that?  Is it louder, stinkier, accompanied by discomfort, causing disruptions in class, affecting social interactions?  


IF has also detected a bit of a conspiracy among the team members... like they are building a case for some argument to change Delightful Boy's placement....nobody is talking.


And then IF gets the IEP invite and on the list was the school social worker, who has never been part of Delightful Boy's team.  


OK, that just wreaks of foreshadowing a shoe dropping at the IEP meeting.  IF is not stupid, could write meaningful IEPs in her sleep, and knows her rights.  The team obviously underestimates her and they certainly are not using her as a resource. It has turned into an us against the parent dynamic and I fear Delightful Boy will get lost in the battle.


It is hard enough for a parent to sort out what their special needs kid needs.  But to try and sort it out objectively when you are battling an ineffective team is impossible.  You need to be able to objectively consider what is best for your kid...but to remain objective when facing a team you perceive as borderline hostile is impossible.  Objectivity is easier when you are sitting across the table from people you know love and care for your kid, who really know your kid and have taken the time to understand him, who believe in your kid.


To sit across the table and develop a meaningful strengths based IEP is absolutely impossible if you (the parent) do not trust the perceptions of the rest of the team.  All your energies have to go to advocacy and 'selling' your child's strengths to a group of people shaking their heads in disagreement.  Your energies cannot possibly be spent in developing an IEP based on mutual beliefs about the student.


I plan on attending this IEP. No parent should have to face that alone.  


I will do all I can to listen objectively to both IF and the worthless team.  I will keep Delightful Boy in mind the whole time and I will insist this IEP team address his specific needs and if they cannot articulate in enough detail what his needs are, I will insist they do FBAs and BIPs  and reconvene the IEP until they can prove they know Delightful Boy and have a plan to help him grow in his way and in his time.


I hope I don't get escorted out of the meeting for disorderly conduct.


I love you, IF!