A Question of Trust

I have trust issues. I know this. I'm working on that.

Recently I posted a piece for Parenting.com ("The Negotiating Season") describing my perception of the IEP process. I didn't intend to present it as anything other than my own perspective, but looking back on it now, I guess I did kind of voice it in terms of a near-universal experience. I'm not terribly apologetic about that; my own conversations with countless parents has led me to the pretty solid conclusion that if anything, we've got it better than almost every other special needs family in the world. So, you know, yay for us, but boo to the bigger picture.

It wasn't long before a special educator chimed in ("Negotiating Season? Not quite.") to offer her thoughts. It wasn't rudely done at all, I'm pleased to say. She certainly does have a different perspective, and this is an important dialogue. I'm glad she wrote it.

If I have any quibble with her post, it would probably be the same one that I identified in my own essay. She presents her own experience as something of a universal one. She responded in particular to my point about the inherent conflict between the parent/family position and that of the school:

Me:
As parents, we advocate for our kids receiving as much in the way of services as we can get, and we do so knowing that our success could very well mean fewer resources for other students. That sounds harsh, but we shouldn't worry too much about that, because the school's position is the opposite. Giving each student as little as they can in the way of individual resources means more for everyone. It's an awkward dance that shouldn't be about money and resources but absolutely is.

Um, no. We do not sit at the table thinking, "let's give each student as little as we can because that means more resources for everyone." We sit there and think about what will be best for each individual student. As teachers we are passionate about your child- we want your child to succeed and we want your child to make unbelievable gains. We also know that some things that look like they will be beneficial actually can be a determinate to your child's learning. Some services look great but will hinder your child's ability to scaffold his/her learning, transfer skills and be independent. And then there is the legal aspect that we are, in fact, held to. Schools are required to provide what is considered a "free and appropriate public education" (FAPE). Sadly appropriate doesn't always transfer to your child achieving their full potential. This "appropriate" piece stumps us too. It's not us, it's the law and the courts and how the word appropriate is determined. But many of us, if we think there is a way, will fight for you.

I think that sounds wonderful. I also think it sounds like a rare thing. Like, unicorn-level rare.

Look, I've met a great many dedicated parent advocates over the years, and I've met a lot of fantastic therapists as well. And I've met and spoken with and worked with many very good special educators. The head of Schuyler's current team is one of the best yet. She listens, really listens, and she's willing to try things that are out of her comfort zone. If she were the person calling the shots for Schuyler, we'd really be accomplishing something.

But there's a hard reality at play. As we've been learning (or relearning, really) lately, the decision-making process is often in the hands of people who make those decisions based on some very dubious criteria. Not just money, either. Things like territorialism, personal bias, and a condescending disregard for dumb old parents in the process. If I ever allowed myself to believe that the kinds of short-sighted decisions that I chronicled in my book were a thing of the past, I'd be setting Schuyler up for an ambush. And I've been guilty of not taking up the fight with enough energy, particularly in the past few years. We're all paying for my failure now.

Here's an example, and I apologize in advance, because it is both long and detailed. This week, in preparation for Schuyler's IEP, I requested that an outside consultant be brought in to speak to the district's team about issues both AAC-focused and big picture. The response I received almost immediately from the district's assistive technology leader was disheartening.

Our request wasn't even considered. It didn't even make it to the IEP meeting. It was dismissed out of hand. The members of Schuyler's team have already received all the training they need, I was informed. And if dumb dad needed more training on how to use Schuyler's AAC (the same system she's been using since 2005), the AT leader would be happy to provide that instruction herself. There's no need for anyone from the outside, because what could this experienced team possibly learn from someone outside the district?

But the thing is, this district's assistive technology team has been failing Schuyler in various ways both large and small since she came to middle school. It's taken a while for that to become apparent since the special education team at Schuyler's school has been so good at helping Schuyler, but the fact remains that in two years, the focus of Schuyler's communication has shifted away from her AAC. Without the support of the AT team, and without an eye to a future in which she will require a more nuanced and comprehensive way to communicate expressively, she's been allowed to get by on her verbal communication, making herself understood in context and losing much of her proficiency on her device.

How does this happen to a kid like Schuyler, someone who has been, almost literally, a poster child for assistive tech? The answer might just partially lie in the fact that over the past two years, the only contact I've had with her assistive tech team leader has been that condescending, "there there, dad" email I received earlier this week. Until I floated the possibility of having someone with a fresh set of eyes and a new perspective on communication come in to speak to Schuyler's team, the district's AT team was perfectly okay with seeing Schuyler a few times a year and not even formulating any kind of plan for addressing her growing awareness of her difference and her subsequent reluctance to use conspicuous speech technology. They didn't even come up with the plan to switch her to the iPad, and until she began showing success with it, they were actually on record as not officially supporting it.

The point of this long-winded rant is simply this. We are in one of the top school districts in the country, and this kind of thing still happens here. This district has money, and has experience, and a sincere desire to do the right thing. And yet after all this time, here we are, trying to get professionals who have worked with Schuyler since kindergarten to listen, to pay attention to what we want and what we believe Schuyler needs. Bruised egos and stepped-on toes still drive policy from time to time, here in this best of all possible worlds.

Most parents have it worse. Most IEP meetings are charged with anxiety because team members don't understand each others' perspectives. Parents don't feel heard, and teachers don't feel respected. But the fact remains that unless a parent has the resources to bring lawyers, guns and money, they are usually in a position of disadvantage.

So yeah. We'd love it if we didn't feel the need to prepare for a fight before the IEP meeting. We'd also like a pony.

Ultimately, even in a competent district like ours, I don't think my point about the different things we bring to the table is all that problematic. It's a simple statement of the reality of allocating limited resources. We're like dinosaurs, in a way. You've got your meat eaters and you've got your plant eaters, and they're all part of the ecosystem. It's probably not much fun to always be searching for food and killing the crap out of everything; that sounds like a lot of work with not a lot of down time. And it definitely sucks to be constantly on alert, just waiting for some carnivore to jump up and bite your face. But everyone's got their part to play.

Special needs parents are probably herbivores. But we do have T-rex dreams.