So yeah, it's been a rough week.
We've been trying to find the lesson from Schuyler's IEP meeting and everything we learned, but it's complicated. The comments on my last post have been varied and helpful, everything from personal experiences of parents to those of persons with disabilities, from advice on navigating the public school system to suggestions of home schooling, and from attempts to explain what the school team may have been thinking and trying to make sense of that to the succinct poetry of "fuck those guys right in the eye".
It's complicated because this isn't like what we faced from Schuyler's previous school in the Austin area. That school, in Manor, was small and rural and unprepared for a student like Schuyler. The fact that they refused to face the fact that they were unprepared made the problem unfixable, but they started off in a very poor position to help her. (I am all too aware of how many families are in similar but inescapable situations.)
But we now find ourselves in perhaps the best public school system in the state of Texas, and certainly one of the most esteemed special education programs. When Plano's educational diagnostician comes to us with a report and an opinion about exactly what Schuyler CAN'T do, she's got the data to back it up. These aren't yokels. These are some very smart, very experienced people who see Schuyler's limitations, and the projections they are making for her aren't pulled out of a hat.
They're smart. Well, the specialists at the Yale Child Study Center were pretty sharp, too. Being smart doesn't mean being right, and for me, being dumb and desperate doesn't mean that I am necessarily overestimating my daughter's capabilities.
Still, for us to read this 19-page report and then look into the eyes of everyone in that room, none of whom indicated any disagreement with the diagnostician's prognostication, and say "This isn't an accurate picture", we need to try to understand how that can happen, and I have to convince myself that I'm not engaged in a fool's errand.
Schuyler's history provides part of the answer, I believe. Schuyler has shown everyone that predictions concerning her possibilities are a sucker bet. She's defied the predictions of smart people before. Perhaps that makes for a swell Hallmark card or an inspirational "Hang in there!" kitty cat poster, but it's due to more than her big heart or plucky spirit or guiding angels or whatever you choose to believe in.
Schuyler's unpredictability and her ability to surprise comes from that broken but amazing brain of hers. It is her monster's greatest and most enduring mystery.
According to the brain scan performed when she was three, anywhere from sixty to seventy-five percent of Schuyler's brain is profoundly affected and deformed by her polymicrogyria. That's a lot. And yet, what a doctor would expect to result in a severely impaired, totally non-ambulatory child has instead produced a vibrant, active little girl whose physical impairments are limited to clumsy hands, minor swallowing issues and some weak facial muscles. It's apparently tricky, trying to come to some agreement as to how cognitively impaired she is, but her intellectual progress has been steady and is showing no signs of flattening out.
Her brain is doing something extraordinary. It's not healing, but it's rewiring, it's improvising, and it's doing so in a way that no one on this planet can explain. Neurologists are fascinated by this kind of brain activity, but they're not surprised. It happens all the time, in different ways. We don't understand how -- our best neuroscientists are little more than village shamans in some ways -- but we know that occasionally the brain finds a way.
Sometimes the human brain is unbelievably fragile and breaks in ways that we can't fix or even comprehend. And then sometimes it just kicks this hard world right in the ass.
The teachers and therapists and diagnosticians at Schuyler's school are smart people. They have years of experience and they have methodologies that have proven effective with a huge number of students. (The Plano Independent School District is massive, with over 54,000 students.) They've had a lot of success stories, and as a result, they have a great deal of well-deserved belief in their systems and their procedures and their data. Their faith is in themselves, and perhaps that's justified.
We have faith in Schuyler. We have faith that her weird and wonderful mind is going to continue surprising us all, in ways that can't be predicted but might be harnessed from time to time, if we open ourselves up to the possibility and commit ourselves to educating HER, this one unique kid, in ways that we've never tried before. We're putting together some things to try over the summer to attempt to do just that.
What if we're wrong about her? What if our optimism is, as one person put it, a product of the rose-colored glasses we're both wearing? (For those of you who have tried to paint this in terms of the befuddled father who just can't handle the truth, you should know that Julie and I are 100% on the same page regarding Schuyler and her abilities.) What if they're right? Then that's the way it goes. Our love for Schuyler certainly won't change, and if she's destined to live with me for the rest of her life, well, that probably sucks for her, but selfishly, I'll be just fine with it. Schuyler is Schuyler, and my affection for her is not dependent on some benchmark she has to reach. Well, of course not.
Having said that, I want to be clear. We believe Schuyler's diagnostician is wrong about her. And we think the rest of her team was wrong, disappointingly and shamefully so, to stand behind this report and to lower their expectations for Schuyler just because they have yet to reach her THEIR way. But I'm glad that Schuyler is in a school that will be ready and more than able to change course and educate her once she begins to confound their scientific, pedagogical, data-crammed predictions.
I'm not sure I have faith in their system, not like I once did. I certainly don't believe in it as strongly as they do. But I understand history, and I have just an inkling of an understanding of Schuyler, so that's where my faith lies. She's done it before. I believe she'll do it again. That's my faith.