Thursday, January 2, 2014

A simmering kind of calm... prepping for Goofy's meeting

 
Ok, I'm calm. I'm absolutely calm. A simmering kind of calm but... good enough. I was great, so great, I took some good advice and walked away from the whole mess for I don't even know how long- a week? shortest week of my freaking life. Today I got a tweet reminding me that tomorrow is the last day of winter break (thank God for tweeting schools) and I'm all NOOOOOO!!! Not yet!!! because Wednesday is Goofy's meeting. January 8th at 8am.

I take a breath and get back to work. I'm still good, still calm, thanking God with everything that's in me for a piece of advice I really needed. I needed the chance to step back and calm down before going at this in a (hopefully) rational and (hopefully) well thought out manner. Putting the girl down for her nap, I'm reading about the expectations of parental involvement. This is the most important to me right now because last year, when the verdict was handed down, I choked. I knew there was information that needed to be addressed but I couldn't remember what it was. The Individuals with Disabilities Education Act, No Child Left Behind, Response to Intervention... They all state that parental involvement is important, that parents need to be informed. I need their words to explain why I am upset that I wasn't even told that Goofy was in RTI, that I have not been included or informed on his plan or his progress, and that I still have not seen any data- even after 3 written requests. I need facts, not emotion. Emotion is going to get us in trouble. well, me. It'll get me in trouble.

 It was really going good all day, all the way up until Goofy walked out of the therapy room with his OT who handed me 3 sheets of paper, apologizing that they were pretty general but letting me know that there were some good ideas there to help him with problem behaviors. Problem behaviors like, "poor organizational skills" and "talks self through a task" and *drumroll* "Stares intensely at people" and "doesn't seem to understand body language or facial expressions." My poker face sucks. I look up from what I just read, and that quick, her eye contact disappears and she's looking anywhere else as she says, "Well, it's probably just the ADHD." Luckily, what I heard was the voice in my head, "Mac, I will not allow cursing at staff." FINE! There were small witnesses anyway.  We go on and I just, I'm so mad!

"No more games,
I'ma change what you call rage
Tear this motherf*cking roof off like 2 dogs caged
I was playing in the beginning, the mood all changed
I been chewed up and spit out and booed off stage..."

Every piece of paper I collect is something that I already told them. When I requested evaluation last year, I told them what I was looking at, I told them what I thought it was, I told them what to do about it. I told them freaking everything and because I said "autism" and they said "*just* ADHD" and we disagreed on one freaking word, they what? Ignored everything!? How is every-single-thing I told them to look at last year suddenly an issue this year when last year it was all in my head because I "worry." How did he not qualify for an IEP for his ADHD because he was "fine" and looked so normal that "anyone walking in the classroom wouldn't be able to tell which one had an aide" and "The ADHD doesn't affect his academic performance enough to warrant an educational diagnosis." and then less than 6 months (in school time) later, he's getting (I'm guessing based on the description) 2nd tier RTI for ADHD behaviors? How was I completely ridiculous in my freak out over him being unable to read because he was behind but it wasn't "worrisome" and less than 3 months later (in school time) he qualifies for remedial reading?    

"But I kept rhyming and stepped right into the next cypher
Best believe somebody's paying the pied piper..."

Fine. No. I need to stop with last year and focus on this year. If I keep thinking about last year, I'll be too angry to get anywhere this year. There's enough pressure as it is. Everything rests on each meeting from here on out. My first step could be Goofy's last chance. The success of one meeting leads to the next appointment, but the end of the line is the end of the line for this year and we have to start all over again preparing for next year from even further back than he is right now. I need to let go of last year and only focus on my right to be informed, my right to participate in my child's education, my right to request evaluation and the rights that come with the evaluation. I need to assert my right to be a fully functioning member of his team, I cannot be that without being fully informed- and that means with the same information the rest of the team has.

To get there, I need to be nice. Calm. Rational.

I close my eyes and I imagine the IEP table, the seats that are filled with various representatives. I picture them sitting in big chairs around 3 sides of the table, I picture them in judges' robes, huge files sitting in front of them while I sit in a small seat, alone on my side in yoga pants, messy hair, and empty handed. I have nothing. None of the power to make decisions, none of the information needed to even weigh in on the decisions. That's not the way it's supposed to be.

I think of all of the parents that came before me and I get so angry because I don't understand how none of the moms and dads that came before me, who have sat in this exact seat, in this exact school, facing this exact team have stood up and demanded a big chair, why they didn't insist on having the same information every other member of the team had, information that it is our right to access. If someone had stood up, I wouldn't have to fight so hard in this fight to just be informed. I am angry with them for not knowing their rights, for not asking to be included.

and then I see the others. The ever changing face in the lonely, little, powerless seat goes from the ones who came before to the ones who haven't been here yet. The ones who are hoping to step onto a solid foundation that the person before them started. "If you don't, then who will?"

Alex's school doesn't understand why they aren't getting elementary students, and I have to laugh. Alex is not the first or the last child this school refused to let go because they misunderstood what the Least Restrictive Environment was, how many others are there? How many students in how many schools are stuck in an inappropriate setting because the school misunderstood the law? with no real hope of that changing because it's decided on an individual basis by the individual child's team, not something that's really dealt with in the Central Office, not something that's double checked. How many kindergarteners went home at the beginning of school to try again next year because they were deemed "not ready" based on behaviors that didn't get any better the next year? How many parents are sitting in that small seat empty handed? How many dyslexic students are not getting special education services because "dyslexia isn't covered under IDEA"? How much longer do we let this go on?

"Success is my only motherf*cking option, failure's not."

For Goofy and for the parents who are coming behind me. The ones who are just as lost as I was with no clue where to even start. I may not be big enough to make waves, but I can start a ripple. I have the right to be informed. Once I get the information I need... I'll have what I need to not choke at the next meeting when my son is counting on me to speak up. So  I'm working toward calm. or at least a slow boil.

6 comments:

  1. So right!! You go Mama! You can do this. You are so much stronger than you even realize. And there are so many people who have been inspired to stand up and make ripples of their own because of you! Keep up the good fight!

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  2. I don't know why this made me cry this morning ... I think back to our IEP meeting at the beginning of this year, how prepared I was, I knew what I wanted, I knew my rights and I won. I think about how all that happened and I think of you my darling ... your ripple reaches farther than you think.... <3 <3 <3

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    Replies
    1. <3

      You hags are determined to make me cry this morning, aren't you?

      Thank you.

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  3. <3 You make those ripples mama! You know Goofy better than they do. Never back down <3

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