Annoyed, yes. Irritated and short, you bet. But a pervasive anger, one that keeps me up at night thinking about all the things I will say, should have said, plan to say...the kind of anger that brings hot tears to the corners of my eyes as I'm rinsing dishes? Nope. Not too much experience with that.
But my son's IEP meeting made me that mad.
It made me so mad that I actually forbade myself to write about it until now, because I worried that I may write something just awful and mean, out of this place of anger I have developed. Five weeks after the meeting and I am still angry. In fact, I have other things that have made me angry to add to the list. But I am pretty sure I can do this without calling anyone names. Probably.
So - the IEP meeting.
I am fortunate enough to have a wonderful friend whose career is in special education. In fact, she has even taught special ed teachers. And honestly, she has listened to my concerns about my son for close to three years now, and is one of those friends who knows when and how to say, "Sam, let it go -- YOU ARE ALL FINE." (We all need a friend like that, I think.) But she had her own concerns with how certain aspects of our son's education was being handled, and offered to be called in during the IEP meeting. She said she wouldn't say anything unless she needed to, but that she would be there, in case.
Thank God.
My friend helped us understand that a medical diagnosis does not necessarily mean an educational diagnosis, but that we had plenty of reason to suspect that Justin's disabilities were keeping him from accessing the general education curriculum, and that accommodations may be needed in order to grant him the educational opportunities he is promised under Missouri law. And that to get an IEP, he has to have an educational diagnosis, meaning he would need to be tested, but that in order to receive testing, a school has to simply suspect that a child has a disability.
Sorry. Getting angry again.
I knew I was doing well in that meeting. I explained our concerns, using the verifiable data to back my concerns up. I used concrete examples. I was clear, concise, calm. My husband spoke up, as well, and he, too, was clear and data-driven. My friend, who had been phoned in, was silent so I assumed she thought we were handling shit like total bosses. And we were. I was certain they would agree to test him - how could they not?
And then two of the six seated there objected, while the rest remained largely silent, with one telling me, almost apologetically, that she had just been given Justin's file that day. But since his teacher didn't seem concerned...
I pointed out that everyone who came into contact with my son, from his family to friends of the family to an entire team of professionals at Children's Mercy whose specialties range from pediatric neurology to autism to behavioral therapy, all had concerns with my son's ability to access the general education curriculum without accommodations except for them, and that I really wanted to know, considering the test scores, the data, the diagnoses, the fact that the teacher sitting right there herself wrote a note saying that my son could not complete any work without a lot of intervention, could someone please tell me AT WHAT POINT DO THEY ACTUALLY START TO BECOME CONCERNED ABOUT A STUDENT?
None of them could really answer that.
What they could do, however, was advise us to use flashcards, and then shove a piece of paper at us that had been printed out, before we even showed up to the meeting,stating they were denying us testing and denying us services.
I was completely numb. Like, car wreck, oh my God this is so surreal, is this really happening numb. THEY ALREADY HAD THE PAPERS DENYING MY SON SERVICES PRINTED OUT.
And then my friend's voice, calm, clear, authoritative, sounded from the phone.
And she was saying shit like "IDEA" and "tier two student" and naming specific tests and saying things like, "I don't believe the teacher is being absolutely truthful about X when one considers Y" and "I believe Justin and Samantha have provided you with more than enough data to support the fact that Justin, Junior has a disability," sounding like a goddamned bad ass and she was advocating for my son and she had the language to do it with and the looks of their faces, stunned and reddened, made my angry heart a little happy, and I had to look at the table to hide my smile.
When she was done, in total mic drop fashion, they pulled the paper that denied us services back and, as a team, decided on what testing to do for Justin Ryan. And, as it turns out, they decided to test him for nearly everything but hearing and vision and daily living skills.
It's not a very good feeling to send my son off to spend the day with a teacher whom I truly don't feel has his best interests at heart. Justin and I have spent hours discussing the reasons why a teacher wouldn't want a child who is struggling to have the support he needs, but we can never come up with a valid reason why -- we just know that it does happen, and it's heartbreakingly unfortuate. His teacher couldn't even be bothered to finish a form sent to her by our son's therapist. Furthermore, she's supposed to be indicating on each worksheet how much help Justin is getting on it. She did it for two days. And then for a week or so, he came home with beautifully completed worksheets with no indication that he had any help. And now that's trickled off and he's coming home with blank worksheets that may or may not have his name partially written at the top.
Because, you see, when a kid doesn't have an IEP, a teacher who may not have the time to give him the help he needs doesn't have to make sure he is getting the help he needs, and so Justin does nothing.
Also, his favorite teacher is the focus room supervisor. Let that sink in.
So he comes home with blank worksheets that he doesn't do in class, plus his homework packet with more worksheets in it for the week, plus his "practice" tracing for numbers and the alphabet, plus the ever-growing list of sight words he is supposed to know and most evenings he looks at me with his tired gray-green eyes, his face growing more angular and older and boyish by the day, and says, "My battery is dead, Mom. It's drained. It can do no more."
And so I do not ask his battery to do anymore.
Now, on top of this, he is dealing with bullies. Unsatisfied (surprise!) with his teacher's response to my concern, I spoke with the principal about it, and a plan was quickly put into place, and they have agreed to work with my son at school on how to deal with bullies. We are working with him at home, as well, but our son doesn't understand. Everyone is his friend. The kid who brained him with a piece of concrete so hard that my son has his first and only scar? Justin asked him to sit next to us when I went to have lunch with him. The little girl who punches him in the stomach? He gave her his graham crackers. And how can I explain to my child that not everyone in this world is his friend? That not everyone in this world deserves to be his friend?
A few weeks ago, my son told me something that blew my mind. Made me cry. Made me think.
"Mommy," he said, "My heart is a house, and anyone can live in it."
And I hate the thought that anyone might tear that house down, or damage it, or weaken it through careless handling and mishandling and ignorance. In fact, that bothers me far more than Justin's inability to identify all the letters of the alphabet, or his tears over sight words. It terrifies me. It makes me cry into my husband's chest, asking what we can do better, or different. It sends me to my knees to pray to Jesus to help me, please, raise this boy in the manner that he deserves to be raised, because my God, I feel like I am not always worthy of the task. Because what if I am the one who tears that house down, or damages it, through careless handling or mishandling -- or because I allowed someone else to handle it carelessly?
I always thought I was pretty okay at this writing stuff. But never, not once, in all my years of pounding away at a keyboard, have I ever been able to articulate something so perfectly, so beautifully.
His heart is a house, and anyone can live in it.
And that, folks, is why disabled simply means different, and never, ever does it mean less than. And it's why he deserves the same education as every other child - because he is worth it, and capable of learning, and I am not going to allow some teacher who decided that an IEP was too much work keep my son from getting just that. Because it isn't that my son knows none of the sight words, or that he can't identify all his letters -- it's that he is starting to understand that other kids understand things that he doesn't, that school is hard for him, and that, in turn, makes him shut down. He no longer wants to try. And when he doesn't even try, he certainly doesn't learn. It's an ugly cycle, and I refuse to let him start in on it.
His heart may be a house, but my heart? It's shaped like a very specific five-year-old boy who fills every nook and cranny of it. He is my whole heart.
