Woof

Sam is over on the couch barking like a dog. Who will be the first to crack and tell him to knock it off?

Mr. Burnham

Consider yourself lucky if you’re one of those people fortunate enough to have had a special teacher in your life. Consider yourself even luckier if there was a special teacher in your kid’s life. It’s rare that someone else considers your kids to be as special as you do. But Bill Burnham did.

Helaina had Mr. Burnham for an English teacher in Middle School. Bill was a great teacher. But what made him great wasn’t how he taught English. (Well, maybe it was, but I can’t say. I never sat in on a class.) What made Bill great to me was that he saw something special in my daughter, not in what she may become, but in who she already was. To Mr. Burnham, Helaina was more than a face in the crowd. And he made her feel special, and not just in school. Bill invited her over to his house to help with sugaring one winter, a memory we both share. He taught her about bee keeping. He took time for her.

Over the years when we were lucky enough to bump into Bill, he always made it seem like it was his pleasure, not just ours. He would always greet Helaina with a smile. He would take the time to catch up with her and was genuinely happy to hear she was doing well. Bill looked at her with what I felt was pride and it made me feel proud too. He cared.

We didn’t see Bill at the Fair last year, and now I suppose, it may have been because he was ill. I wish I knew then, though I don’t know what I would have done. I would like to think that I could have let him know how much we appreciated him and how special we thought he is, and how the pleasure really had been all ours.

IEP Day

Another IEP meeting. We had a lot of documentation on what Sam needed (thanks to others for beating in an understanding of the test scores). There was no fight. It feels strangely anticlimactic.
Now will come more meetings and having to figure out a path for Sam at the new school next year.

I hope this is a better fit for him than I feel like it is.

Blah.

Prelude to the Graduation Ceremony

9:00: Muggy weather. Massive crowd under a big tent on the common. We're just arriving. Most seats aren't occupied but are being saved with different pieces of paraphernalia.

9:10: Finally find a seat. It's way in the back, outside the tent. One weasel in front of me is sitting in the middle of a sea of empty seats that he has saved using event programs. He is spending most of his time frantically defending his claim from interlopers.

9:35: Everyone is milling about, talking. Band sound check. Utter confusion. They have unwisely chosen the Star Spangle Banner for their sound check. Most don't notice and continue talking and milling about. Some people stand. What's going on? Guy in front tentatively starts to put his hand over his heart. Realizes he looks foolish. Starts to put it down. Realizes he looks unpatriotic. This is a rehearsal, does it count???

9:40: Notice a gift bag on the second chair next to me. Has the name "Nick" written on the card on top. Consider crossing it out and writing "Rachael" on it. Decide it's too risky.

9:45: Now another guy in front of me. Overweight, stuffed into a jogging suit. This balloon is blocking my view. Constantly eating. Points over at another tent, says: "There's more food over there, hey". Chips fall from his mouth. Is he with anyone? Does he even know anyone here?

9:50: Lady saves the seat next to me with a mini backpack, then leaves. Should this be considered a "suspicious package"? Tempted to ask for an evacuation. May get better seat.

9:53: Another guy knocks into me as he goes to throw his leftovers in the trash. Think I wrote on his jacket with my pen. Feeling better.

Actual Size Head (Un-retouched)

9:59 Now a crunchy skinned lady decides to plunk her chair in front of me. Assures me that I don't mind. Blocks my view. She's loud, pushy and has a big head. Stop talking. Nobody cares what you're saying. Newsflash: your perfume is not hiding the smell of stale cigarette smoke. I sense a cloud of death hanging over her. Smell makes me feel like I'm in a restroom on the turnpike.
Another woman comes along and leans against the pole in front of her. Blocks her view.
Justice.
I decide they are both my enemy.

10:05: Take Sam to the restroom. Glimpse myself in the mirror on the way in. Ugh. Look thirty years older than I feel. Must be the lighting.

10:10: Trying to find Jake, who's holding my seat. Crowd is bigger and noisier than when I left. See pending signs of an unruly mob.

10:20: Guy behind me talking to another guy about his upcoming plans. Apparently he's "deep into Radio Shack".

10:23: Balloon Man is back. Pacing. Eating. Now he's leaning against a tent pole. Doesn't look good. Move away from the tent.

10:32: I guess starting at 10:30 sharp means something different here. Crowded. Noisy. Decide I hate people. Actually, I already knew that. Decide I was right. Give myself a mental pat on the back for my excellent judgement.

10:33: Overweight girl in clingy dress walks by. This muggy weather is not being kind to any of us.

10:34: Ceremony starts. Band plays.

10:45: Hundreds of kids are marching to the tent. Endless. Are these kids looping around or what?

10:54: Last of the kids are marching in. Band is obviously getting tired. A tuba and flute seem to be carrying the day.

10:55: Lady spots me eyeing the "Nick" bag. Moves it.

10:56: Overweight girl sits in chair next to me. Feel uncomfortable. Move my chair over six inches. Doesn't help. Still feel uncomfortable.

My View of the Festivities

11:00: Everyone that has seats is seated. Ceremony gets under way.







P.S. I would like to congratulate Rachael for having spent the last four years earning a blank piece of paper in a beautiful diploma cover. It will look lovely framed and hanging on our wall.

More Adventures in IEP Land

In thinking about where we are heading down this year's IEP path, I was reviewing some of my notes from past efforts. Man, some of this stuff brings back painful memories. One of the notes I'm reading right now has to do with comments that his then speech teacher was making about Sam. Demona, as I'll call her, was saying that she "wants him to care more" and wants him to "try a little harder". She had him figured out. Sam's problem had nothing to do with the fist sized brain tumor that had been removed years before. She knew a lazy kid when she saw one.

Without knowing Sam, it's hard to put the absurdity of these comments in context.

I asked Demona if she read his neuropsyc evaluation.
"That's a couple of years old.", Demona brushed it aside.
"Yes, but it talks about these issues being with him for the rest of his life. Did you read all of the other evaluations?", I asked. "It all backs it up."
Demona didn't answer. She wasn't going to be bamboozled by years of documentation saying otherwise. She knew the problem. Didn't matter what all of the other teachers said. Didn't matter what all of the other IEPs said.

Over the years, we spent a lot of time figuring out what the right balance of work is for Sam. Effort was never his problem. The issue wasn't (and isn't) getting good grades. The issue is, how can he best learn? Sam, would sit and try to do his assignments from the time he got home until bedtime. But he didn't get it. He didn't understand it. It might as well have been in a foreign language. You couldn't get him to break away even though he was going in circles. He would worry about getting all of his work done. And he would worry that it was done right. Left alone, he would have sat there all night, every night.

And it wouldn't end when he climbed into bed. I remember more than once, tucking him into bed and him looking up at me with that painful expression on his face, saying that maybe I could get him up early in the morning so he could try again. I would try to get him to relax, but I knew it would be futile. I would peek in on him hours later and he would still be awake, whispering to himself, worrying, and pulling at threads on his PJ's and socks. When he would wake up the next morning, he would leave a trail of treads as he went downstairs.

Despite Demona's "professional" opinion, effort was never the issue. Caring was never the issue. Being able to understand what he was looking at was the problem. He worked hard and he wanted to be successful. As his parent, I just wanted to help him learn and see that he gets support learning. It didn't matter to me if it took longer, and I didn't expect it to be made easy for him, just reachable.

So, what's the moral of this story? Beats me, but don't trust the judgement of someone named "Demona".

More on the IEP

If you're a parent and ever have to participate in an Individual Education Plan process, be prepared. It's grueling and once it's done, you realize it's never done. We're on our tenth year of going through this and it doesn't get any easier. The issues change and I've learned some hard lessons along the way, but I'm always worried. I'm worried about what I'm not seeing. I worry about making the right choices for Sam. And I worry that the decisions I'm making at these meetings will affect him profoundly in the coming year, and for the rest of his life.

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.