Monday, April 7, 2014

Don't Poke the Bear

There are few things as important to us as our children. Let me rephrase, there is nothing more important to us than our children. But for some reason, unbeknownst to me, in a public school system where supposedly nothing short of excellence will be tolerated, my children are once again the forgotten ones. Not only not important, but seemingly their education given up on. Their development and progress simply does not matter to the school.
There is nothing like an IEP (individual education plan) meeting to catapult a person into this reality.
Let me give you a little taste. The uplifting message from PT and OT in this particular meeting was that, my autistic, basically nonverbal child in the most severally disabled classroom in the district has "plateaued."
"Nothing more they can do to help him."
"They feel like their time is not well spent with him."
"There is nothing that they, as therapists, can do, that can't be done by his teacher and his aides in the classroom." (because the teachers and aides don't do enough,that is sarcasm at its height-in actuality these people are literally sent from heaven and already do everything for the kids, so why don't we just put a little more on their plate?). 
So just to recap in case you missed something and because I don't still fully believe it myself:
Johnny is in the ONLY FMD (functional mental disability) classroom in all the elementary schools in this city.  He is nonverbal, has had an autism diagnosis since he was three, is one of only four children in the most severely disabled classroom in the entire district and he no longer qualifies for PT services, and his OT services were recommended to be reduced.
"His education is not impacted by safety issues."
Are we talking about the child who will walk out in four lanes of traffic without blinking an eye, or the child that will climb a jungle gym and stand at the very edge of an overhang, look right at you and dare you with his eyes to pay attention to something or someone else and if you do, he will step off the ledge, the child who has zero danger awareness or if he does know, he doesn't care, the child that still does not alternate his feet when going down stairs (which is a big milestone in development). The child that does not throw, pass, or kick a ball on command, the child that cannot sit in a given seat for any significant amount of time without intervention, prompts or rewards, the child that will dart through the school-classrooms, cafeterias, or gym without regard to his own or anyone else's safety. The child who has had poor coordination and low muscle tone on every developmental evaluation since he was 10 months old.  
This child is no longer receiving PT services? Actually that is a statement not a question-this child is no longer receiving PT services. He is still receiving OT, don't even get me started on this topic. My rage will go unbridled until my fingers fall off and I am grateful he is still getting this much needed therapy. I just keep thinking how it was mentioned that the therapists do not have the "resources" to help John. If anyone has a child in this school system, that would make your blood boil, it just would not be tolerated. And I find it equally unacceptable to be said regarding my child's education and future. Yes, I understand it is a public school, but tell me what you need to help him and I will get it. Instead, they look at me for what to do, what to try, strategies to use, ideas. I keep comparing it to getting an email from my oldest child's math teacher asking me how to teach him Algebra. I know, wouldn't happen. 
One thing that became blatantly obvious on that day, in that meeting. No one sitting around me at that table could see things from my perspective. Maybe that's not their fault, maybe it's the "system" that is broken. But, I know they look at me like I am so very different than they, like they could never be me. And I get that, I thought I could never be me.  But I found this "throw up our hands" mentality from therapists in our or any school system, embarrassing and offensive.
Imagine as a parent with a child at any level, being told that they had plateaued? Yeah, I thought it was unimaginable too. For those of you that never have to go through an IEP meeting-you are truly a fortunate person. For those of you that do, I feel ya, it sucks and as much as you want to believe that everyone is there for your child, unfortunately, some are not. You and you alone must fight for your kid and their education. Your child is worth it, no matter if the message is subtle or as blatant as the one above.
Luckily, I have taken a couple of weeks to calm down (oh yeah, totally calm now, I deleted my first rant immediately after the meeting). Now, more than anything, I am disappointed and sad. Of course, I plan to continue working cooperatively with the school, but I will not cower and allow my child to slip through, be forgotten, not get the services he is entitled to and desperately needs for his development and gasp, his education.  I will take accountability for my part. I got lazy, complacent, hibernated for a bit because I felt comfortable, like we were in a good place. Unfortunately, my son couldn't tell me otherwise. I am his voice.
There is no place for a sense of security in special education- the bear has been poked. 
I swear I didn't write this! 




Funny Note: People have asked me why I used this title-Adam says this to Jacob about making me mad :).