The IEP process consists of your child's teacher(s), therapist(s) (speech, physical, or otherwise), and other school professionals evaluating your child to 1) access where they're at, 2) set goals for where they should be by the end of the year , and 3) determine an educational assistance plan that will help them reach those goals throughout the coming school year. Once the evaluations have been completed, these professionals meet along with the parents and present their findings. Everyone, in theory, then works to create a written plan to address the students needs in the upcoming school year. The plan might include classroom modifications, various therapies, etc, depending on the child's needs. This effort produces a document that all must sign off on and is, again in theory, legally binding. Legally binding that is, if you know that it is not being followed and then have the money to pursue it in court.
I was naive when Sam was recovering from his operation. I thought that everyone, including his school, would be supportive and do whatever it would take to help him in what would ultimately be a lifelong recovery. I was right about family and friends, I was wrong about the school. That was my biggest mistake, and unfortunately it took a while to sink in.
I learned, way too slowly, three basic things when it came to dealing with the home district school department: The first thing was that even though you're part of a 'team" you should expect to be the only one fighting for your kid.You're the one who is emotionally invested. You're the one who will be with them every day, likely for the rest of your lives. Your child doesn't carry that same level of importance with anyone else sitting around that table.
The second thing I learned was that while teachers are involved in the meetings, and while they can run the full spectrum from caring to indifference, ultimately, they work for the administrators. If you're lucky enough to have a teacher that cares, and there are a lot of them, they are still, first and foremost an employee. And like all employees, they can only do (or say) so much. (And if you're unlucky enough to have a teacher who doesn't care..., well, that's a story for another day).
The last, and hardest thing to learn was that their bosses, the school administrators, call the shots. School administrators are bureaucrats who only know as much about your child as they've bothered to read. To them, your child is an expense. For a special needs student, it's a very big expense.
This hit home for me at an early IEP meeting when Sam was going to transition from the public pre-school into kindergarten. This was about a year or so after his brain surgery. It was the end of the school year and I remember sitting at this big table in yet another meeting with teachers and therapists and administrators, all saying what a great kid he was, but refusing to acknowledge his very obvious disabilities. Whenever I challenged them on what he needed, the Administrator would explain why Sam didn't need those things. While the Administrator continued with what I was beginning to realize was her bamboozling, his teachers and therapists sat around the table with blank Stepford Wives expressions on their faces, occasionally glancing sideways at each other.
I sat at this table while everyone lauded him with complements but offered little or no help. I remember thinking "I'm getting screwed here but I can't figure out how." I remember feeling a dawning realization that " This isn't some game. This is his LIFE we're talking about. This is the path we're putting him on. What is wrong with these people?" As I looked around the table, I wondered what happened to these people? At what point in their lives did they stop being educators and become bureaucrats instead? Surely, each of them must have gone into Education to make a difference in kids lives, to help kids. At what point did that change? Do they even realize it? Do they see what they've become?
In this "light dawns on Marblehead" moment, I remember taking all of this in and thinking that helping him is not something that starts tomorrow. It starts right here, right now and I had better get in gear. It was like a fog was lifting. I had been looking at this all wrong. These people were not his friends. They weren't here to help. They were here to minimize damage; to minimize expenses. It was time for me to get organized. I had been relying too much on them, thinking we were all "working together". Things were slowly sinking in. I had been riding in their wake when I should have been setting the course.
The one doctor that felt things were pretty straight forward and considered Sam's school psychiatrist "a colleague", was so jaded after being jerked around all summer long, that he called me out of the blue in late August to bring Sam in for more testing. He was afraid that the school would find some technicality to dismiss his entire report.
I sought out an outside advocacy group. The guy I spoke to looked at Sam's case and all my documentation. He was familiar with my town. He laid out for me the course this was going to take, all the way through State mediation and into court. He knew the name of the town's lawyer. He knew Sam wouldn't get help from these people while all of this was happening. And as he put it, "Even when you eventually win, do you really have any confidence that these people will put in the effort, no matter what's written in the IEP?" He had been down this road many times before.
Eventually, we got Sam into a different school district, "School Choice" they call it. The difference was night and day. At these meetings, everyone sat at the table, coordinating their various responsibilities in ways they felt would most benefit Sam. I sat there clutching my binder filled with past testing and other documentation, ready to have a battle. I sat bewildered, trying to figure out how I was getting screwed when it didn't look that way at all. What were these people trying to put over on me? When would the other shoe would drop? When would this become a battle?
The other shoe didn't drop... not yet, at least. Yes, there were disagreements, some were strong, prolonged and even heated. But they were few and they were reasonable disagreements, the kind people have when they perceive the same things differently. I never felt that anyone ever had anything other than Sam's best interest at heart. It brought into even starker contrast what a sad joke the meetings at his home district had been.
But we're at a crossroads again this year. It's time for Sam to transition to another school and he has two options. At least I think he does. His present system is now faced with the prospect of potentially losing him as a student, so noise is being made that we may not have the choice to leave "if they can meet his needs". For the first time since those early days, I feel like he is being viewed as a dollar sign again. For the first time since then, I'm hearing about what the school doesn't have to do. I get nervous when rule books are pulled out to justify why decisions are being made. History repeats itself? We'll soon see.
Either way, neither of his options feel like an ideal fit. Compromises will have to be made and I will have to tell myself over and over again that I am not compromising his future; that I am not compromising his life. Maybe I can even get myself to believe it someday.
All the hopes and fears and uncertainty of raising a child are magnified to the nth degree when raising a child with special needs. Every decision carries more profound implications. Every decision feels more precarious.
I worry about not doing him justice. And I worry about what I am missing.
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