Tuesday, December 13, 2011

Is this supposed to be about my kid?

It's easy to talk about myself.  It's harder to talk about my kid.  Bay State Parent  hit and took over November, and the blog became about that and our reactions to it.  However, I maaaaaaay have not talked about Owen's Individualized Educational Plan (IEP) Placement meeting on November 22nd.  I pretty much blocked the whole thing out - I went, I heard, I left, and I tried to devote very little brain stress to it.  We therapists call it "compartmentalizing" (some may say denial, but fuck them, I'm the one with the degree).

First of all, Owen is in an inclusion model class for the morning with 'typical' kids, and a substantially separate class in the afternoon with other kids that have disabilities.  Our 'Placement' meeting was to review the appropriateness of these two settings.   I inadvertently expect all meetings to be full of bad news so I usually just plan for the worst.  We were going in to discuss placing Owen in the "Orange Room" - it's the "Applied Behavioral Analysis" (ABA) Room , or as other people may call it, 'The Autism Classroom." 
I was aware and fine with this going into this meeting.  I trust his school and know they genuinely want a program he will best benefit from.  Plus, I know he has behavioral issues and I am happy to have more help and input.  Well, maybe 'happy' is the wrong word, perhaps 'willing' and 'in need'.  It's still hard, still feels like another 'failure,' couldn't make it in this class let's try another...

Thankfully my friend Melissa could come to the meeting with me.  Believe me people, this is MUCH NEEDED.  I  can not hear what anyone in the meeting is saying.  Sometimes I'm still hearing someone else's comment in my head, or I'm trying to remember another point I want to make, or I just don't hear a comment correctly.  There were times during the meeting Melissa would look at me in the eyes, as if I were 5 years old, and  repeat slowly and clearly what someone had just said to me.  You really need a translator when you are a parent at these meetings, I don't care if you have been in special education for 30 years, parents have a hard time hearing what is being said to them, and frankly school staff isn't always as forthcoming as they would need to be for some people.
I'm not sure 'professionals'  know, but I'm aware of "sandwiching."  Sandwiching is a system of 'nice comment, criticism, nice comment' to give you some warm fuzzies amidst all the bad news.  Example - "He is so cute, he needs to work on excitability, but he's been doing so well lately!"  Anyway, I don't fall for tricks.

In O's meeting, his teachers and staff were supporting his move to the room and discussing the areas he has difficulty in.  He has 'hyper arousal' and 'excitability' issues, he gets 'overstimulated easily' is gets 'easily distracted.'  He has a difficult time with transitions and gets overly excited before they happen.  He has a REALLY hard time in the inclusion class, where it is loud, fast paced, and active, even though we were  beyond lucky to have an inclusion teacher who signs.  I kept waiting for the school to tell me they wanted him out of inclusion - his inclusion teacher kept talking about his progress, and I kept waiting.  Finally I asked "So, you want to keep him?"  She laughed, patted my arm and said "Of course I want to keep him! I'm certainly not giving him up!"  I turned to Melissa, who looked me in the eyes, spoke slowly, and asked "Do you understand? They are keeping him in inclusion."  Ooooooooooooooh.

He'd spend his time in the "Orange Room" in the afternoon with academic goals targeted more specifically.  Now, he has two aides (one in am and one in pm), there he'll have one specially trained ABA aide.  There is more staff support and a higher ratio.  There is a home component where they can come here/ we go there to discuss any concerns and strategies.   What's not to like right? Except by the way - Owen doesn't have autism, and those models don't all work.  Matter of fact some actually make him worse.
Unfortunately for me, the ABA classroom program IEP meeting representative (lots of letters, eh?) was a some younger guy who's NEVER MET ME.  He went on to describe the ABA program for me (ummm, I already agreed to it, do you think I would be here if I didn't?) and what ABA is..and he went on...and on....and on....and on...  I'm thinking "I KNOW! I KNOW! WTF DO YOU THINK I DO FOR WORK! KIDS' MENTAL HEALTH! I'VE HEARD OF IT! BEEN THERE! I KNOW! I  KNOW! I KNOW"  On the outside, I looked interested and nodded my head hoping he would recognize my social cues (combined with my words like "I know. I understand. I know").  But no.  Then I started to get really pissed.  He appeared (at least in my insane mind) to have taken over the meeting while there were 7 other woman  to hear from WHO KNEW ME AND MY KID! WHO YOU DON'T KNOW!  Then I started a non-stop head nod - over and over and over until my head started to hurt from a possible concussion from fast-nod.  Nope, still talking.  Finally, in pent up anger, I (maybe a little loudly) said "I KNOW WHAT ABA IS! ITS LIKE DOG TRAINING!"  He started stammering something, I'm sorry I minimized his Master's degree, but then I said aloud "You give my kid 'edibles' to do his work.  That's pretty much dog training to me."
After an hour in a small overheated room, we left.  I flipped out when we Melis and I walked out the door, I saw the "You are crazy look" in her eye, and once I vented I felt btter, but I'm still pissed I didn't get a chance to hear from all OT, PT, or Speech because that pompous ass was rambling.  Or maybe I'm just crazy, whatever.
Owen will be transitioning starting this week, by January he should be set in his new routine.  The school  will still be keeping in the parts of the day he enjoys and is successfull at.  He has a lot of friend in his afternoon class and that room will still be a part of his day.  We'll see how it goes.

In early December I went into Owen's inclusion class to read a book, and chose "Where's that Cat?"  a longtime fave of both B and O. 
It was so fun to be 'back' in a preschool class. I have worked in them throughout college and grad school and some work as a social worker years ago.  I love young kids, they are some of the most fun kids to work with -everything is new and interesting and exciting, the things they say, oy, hilarious.  It's the most uninhibited and fun age.
Reading a book to O's class was the orange room reinforcer that I DIDNT need.  He had such a hard time with me being there.  The best I can describe Owen's 'easily excitability' - is that it's like he has a layer of skin removed.  The world hits him harder and stronger than it does most of us.  Sounds are louder, lights brighter, places more overwhelming.  It's like being in a fun house without the fun - the floor isn't stable, you don't feel safe, flashing lights and spontaneous noises everywhere.  It's a tough little life to live.
He just couldn't 'handle' me being there - both extremely happy and excited, but confused, why am I there? Reading a book? Reading HIS book?  His excitement and confusion come out of his body, the only way he can express it.  He couldn't stay in his seat, was running, pushing, throwing himself backward, while I'm just calmly reading (at least on the outside).   There was an adorable little blond girl there  I wanted to take home.  She asked questions, and came over to talk to me after.  Meanwhile, Owen was wrestling with his aide and I watched him attempt to slap her as she ducked and said  patiently "No thank you."  Yep, it was very evident how much Owen struggles.  Painfully,  painfully evident. 
The kids did a little activity with scissors and glue, and I visited each table.  There were several other kids with disabilities there, all sitting and working on their project.  Owen was sitting at his table and threw the paper on the floor.  Repeatedly.  He tried to escape a few more times, and finally started to settle down as the kids got ready for recess.  I have received many a note home telling me "Owen loves the Freeze Dance."  The teacher decided to put on the "Freeze Dance Song."  And there, on a brisk December Friday morning, me, Owen, and his classmates all bundled in coats and hats danced and sang along to the "Freeze Dance...."  "And don't forget to FREEZE! And now dance....."  Just a moment, but a moment, and we're just like everyone else. 
Owen's class walked to recess, and Owen and his aide walked me out to my car.  He waved and watched as I drove away, and like always, I beeped the horn.   Later that night, for the first time in months, I cried.  I thought of Fragile X and cried, picturing those kids, and Owen, and I allowed myself a brief moment of grief.
But that's it, and it's over, life doesn't wait and crying doesn't change anything.
It's just so much easier to talk about me.

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