The Anxious Season

It’s that time of year again. Schuyler’s IEP meeting is today.

Did you see that? I said that without anxiety, without fear and without slurring my words or developing a nervous tic. I must be getting better at this.

We are generally in a good place for this meeting. The biggest news is that Schuyler herself will be attending the meeting for the first time this year. This is a big deal; it has always been our intention that as soon as she was ready, Schuyler should be present, advocating for her own needs and participating in the decisions being made about her future. I look forward to a day when Schuyler drives the agenda for these meetings.

That day will not be today, however. Today, we’re just hoping she’ll stay focused long enough to make it through the meeting without bribery, Angry Birds or a sedative. But from small beginnings like this, great things grow. I’m excited for her.

Like any special needs parents, we’ve experienced bad IEP meetings in the past. Our current situation is actually pretty golden, particularly compared to ones that took place before we moved to this school district. I can remember one of the very earliest, when Schuyler was just beginning to use an advanced electronic speech device. The technology adviser to the district had been making noise about how Schuyler wasn’t ready for such an advanced model, and that more support from the school wasn’t warranted. We knew better, but our attempts to convince anyone else of the potential for Schuyler fell on unreceptive ears.

A few nights before the IEP meeting, I videotaped Schuyler answering questions on her speech device, including many that required her to move through subdirectories. She had only been playing around with the device for about two weeks. Despite the newness of the device in her curriculum, however, she was able to answer questions using preprogrammed answers. She was able to find and identify colors of specific objects (in this case, rubber ducks). She navigated multiple levels and subdirectories in order to find food menu selections, and she was able to put her choices into very simple sentences. Most of all, she was enthusiastic about using the device. She consistently answered questions with the device that she was perfectly capable of addressing using sign language. And she was just barely getting started. Two weeks had given her this much.

The video was convincing; indeed, it turned around many attitudes among her support team, attitudes that I suspect were built on our reputations as annoying know-it-all parents and because of people like the technology advisor, professionals who were supposed to know better, who were supposed to do better than they did. It would have been easy to feel smug in the face of that meeting, and honestly, I did. For a while, anyway. But the more I thought about it, the more it bothered me. Should it really be the job of a parent to resort to videotaping their own child at home in order to be taken seriously? More importantly to us, should teachers be in the position of limiting a child’s options, basing that decision on budgetary issues?

You might be surprised at my answer, at least to that second question. I recognize the very real fact that for most teachers and administrators, the question quite often boils down to exactly that. What can we afford to do? How much can we afford to help an individual student when each resource that goes into one child is taken away from the rest? It’s a real question, and I recognize that for a small school like the one Schuyler attended, that one child’s needs could very directly affect the services that the rest of his or her class receives. It’s an ugly way to look at it, but it’s a fact and we all know it.

I get a lot of emails and questions about IEPs, particularly from parents who are new to the process and may be attending their first meeting. The one thing that I try to give them is an understanding, or at least my understanding, of how the system works. And I do believe that it works, mostly, and that federal law provides more than adequate protection for the majority of special needs students. I give these parents my opinion, which of course is mine alone and based on purely anecdotal information. I tell them that the key to developing a successful IEP is to recognize a few things going in.

First of all, parents need to understand that everyone in that meeting is there for the same reason: to help our kids. I am convinced that even the people who made our lives the hardest did so out of a sincere belief that what they were doing was in the best interests of Schuyler and her classmates. There aren’t very many outright villains at an IEP meeting, although I imagine there are plenty of parents and teachers and SLPs who would be willing to rebut that point. We’ve all got the same interest at heart.

But having the same interest, my second point begins, does NOT mean that we’re all trying to achieve the same things. The two points sound close, and they are, really. The teachers and support staff want to help their children, they want them all to go into the world with every advantage that the schools can give them. Our goal as parents is to help our child get those same advantages. The key to successfully navigating the IEP meeting, in my opinion, is to recognize that because of their finite resources, the best way for the teachers and administrators to accomplish their goal is to spread their resources out as evenly as possible. Or put more indelicately, I tell these advice-seeking parents, they can do their jobs more successfully by giving your child less.

It sounds harsh until you examine the flip side of that. Your job as a parent, I tell them, is the exact opposite. It sounds callous, as if you are saying you don’t care about other disabled kids as long as your own child gets what they need, and it’s not that simple, not at all. Special needs parents are some of the most sympathetic people on earth, for perhaps obvious reasons. But in that meeting, it is the parent’s role as their child’s advocate to attempt to secure the most resources for their kid, at the necessary expense of other kids.

It sounds crass when stated that way. In a perfect world, the village would take care of them all. But the truth is what it is, and the system works when everyone takes their position with confidence and doesn’t take the other side’s position personally. It’s inflammatory, perhaps, to talk about sides, because what ideally emerges out of this conflict is a plan for that child that balances every party’s needs and responsibilities. It forms from compromise, and it works when parents respect the teachers and the support staff, and when the school believes in the parents and takes seriously their instinctual knowledge of what their child is capable of. It resembles an architectural structure, supported from different angles. When the Individuals with Disabilities Education Act works properly, no parent gets to run roughshod over a school, and no school gets ultimate control over a child’s curriculum.

And in the end, everyone is right back where they started, trying to help the student.

Which is not to say that I didn’t wonder about the feasibility of brining a flask to the meeting today. I mean, if everyone plays nice, I’ll be happy to share.