I normally post on Tuesday mornings, but this week, I waited an extra day, for the simple reason that we had a short little mini IEP meeting scheduled for Tuesday morning. I thought perhaps I would have some thoughts or emotions to share afterwards. IEP meetings are always fraught with dangerous possibilities, even the brief ones concerned mostly with amendments or slight changes. There’s something about sitting at that table with the whole team and seeing the paperwork projected up on a screen that kicks the anxiety levels up for special needs parents. Perhaps it becomes a Pavlovian response. Woof.
But now that I sit down to actually write, I find it’s not so simple. I think I’m becoming desensitized to much of the anxiety, and not necessarily in a good way.
I recently read an article which posed a question that honestly hadn’t occurred to me before. Can the perhaps inevitable hyper-vigilance that comes from parenting a child with a disability result in (or manifest as a symptom of) Post-Traumatic Stress Disorder? I’m mildly surprised that I’d never thought of it in those terms, since the obvious answer is yes, of course it can. And the question is more complicated because for parents of kids with disabilities, hyper-vigilance isn’t necessarily an inappropriate response. Terms like “hyper-vigilance” and “helicopter parenting” don’t carry the same meanings to those of us taking care of kids with disabilities. For many, they are meaningless descriptors. A constant state of vigilance, near-constant supervision, cradle-to-grave worry, these are necessities for a great many special needs parents. The vocabulary of the abled fails us in that regard. And PTSD may just be one of those things we file away with all the other uniquely unsettling stuff that comes with the territory.
Fear is such a central part of raising a vulnerable child. I know that for me, at least, it’s not the only emotion, or even the most powerful. Being Schuyler’s father is enriching and satisfying in ways I can’t even begin to describe. It’s a job I recommend without hesitation. But my own fears are very real, and honestly, they’re appropriate. I ignore them at Schuyler’s peril. Most importantly, I know that my fears for her are much less intense than those justifiably felt by many disability parents for their much more fragile and vulnerable kids.
What I’m finding now as we attend IEP meetings at the school is that the fears I bring with me aren’t like the ones I brought before. But the flip side of that is that I don’t know that I bring the same hopes with me anymore, either. One of my greatest fears used to be that some of Schuyler’s teachers might be trying to run out the clock on her. Now, with Schuyler as a newly-minted seventeen year-old, I’m afraid I’m starting to watch the clock a little myself.
I’m recognizing some hard truths of late. One is that school is becoming less and less about educating Schuyler in an inclusive environment and more about simply acclimating her to social, public situations so that when she leaves the public school system, she’ll at least know how to move through the world. Perhaps a harder truth for me to accept is that this might not be the worst approach at this stage of the game.
Schuyler is a great kid, and she’s more than worth the hard work it takes to understand how she functions. But it is hard work. She’s complicated, and made more so because she presents a pretty straight-forward version of herself that can be easy to misjudge. Schuyler is emotionally complex, but she doesn’t want you to know that, and if you’re not paying close attention, you’ll miss it.
I think the school has recognized that this year, because they’re finally taking some steps to try to dig a little deeper into her weird and wonderful self. I wish I felt more excitement about that, since it’s something I’ve been wanting since she entered high school two years ago. I wish my anxiety were fueling my advocacy with the intensity it once did.
But to be honest, I’m feeling worn down, like we’ve been here before, on this island of good intentions and big plans, and I know how it plays out. I don’t think I’ll feel this way forever, and I might even recover my mojo before Schuyler’s actual, full-blown, brace-yourself-and-bring-a-flask IEP meeting in a few weeks. But for now, I find myself sitting at that big table listening to another enthusiastic teacher with another new approach to Schuyler, and I find myself thinking simply, “Please, do no harm.”
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