Wednesday, May 29, 2013


By Robert Rummel-Hudson from

I feel like I want to talk about the events of last week, in which we revisited Schuyler’s IEP from a few weeks ago in order to put in place better speech and language goals than were originally presented to us. I want to talk about the shift in philosophy in her AAC use, how her verbal expressive language isn’t keeping up with what she’s capable of. I want to talk about how she’s been allowed to make some choices that she wasn’t quite ready for, and the work that lies ahead for her and for us. These are the things that have occupied my mind so deeply for so many weeks, so much so that the thought of actually discussing them in detail now feels rather daunting.

So I’ll simply say that conversations have been had, many of them. These conversations could very well lead to big changes, or they could provide a smoke screen, cover for returning to a way of working with her that has been easy, even as it hasn’t worked.

I guess that’s been the recurring theme. Conversations.

There were conversations in the original IEP meeting that were less than productive. Opening salvos, perhaps. “Here’s how things are going to be, and lucky you, dumb parents! All you have to do is sign!”

There were conversations that followed, in which our concerns were expressed, perhaps vigorously, about how Schuyler is communicating, how she is allowed to make herself understood, painfully, and what a very low bar was being set in school for what we should consider to be success. We talked about what she’s capable of communicating when she uses her iPad, and we handed out copies of the poem she wrote a few weeks ago, to teachers who were frankly shocked that the monosyllabic student they thought they knew had written such a thing.

Conversations were had about the future, and how Schuyler desperately needs a total shift in the communication philosophy being followed by every teacher who sees her. We talked about how that change might take place, and about what we want the school district to give. We asked for an outside consultant, one who’s been working with Schuyler and with us, to come facilitate a conversation, a workshop with the whole team. We were told that this was the job of the assistive technology team already in place. We met resistance.

Conversations took place, frank ones, about our lack of confidence in those changes truly being embraced without a facilitator from outside the system. Conversations took place that were difficult to hear, for both sides.

And Schuyler was there for every last one of them. Conversations were had about her, and not without her.

This past week, before the IEP followup, a very different conversation took place. Three of us were on the line; a representative of the school district’s assistive technology team, the amazing speech language pathologist with whom we’ve been consulting and who has come to know Schuyler as a friend, and myself. It was a very good conversation. It was one in which all three of us at one point or another faced ideas and concepts that were new to us. It was a microcosm of exactly the kind of facilitated dialogue that we’re pushing for, and pushing hard. It felt like success.

And the next day, there was the IEP followup. We pushed hard for our own communication goals to be written into the IEP, and we were ultimately successful. We also advocated for this facilitated workshop, but with no concrete decisions made. We made a solid case for it, though. Of that I feel relatively certain. The answer we hope to get from a dialogue like that isn’t one I could even quantify, I said. In a conversation of less than an hour the previous day, three of us opened our eyes to possibilities. A larger conversation? Those possibilities are unimaginable, if only people will choose to hear.

There have been so many conversations of late. Schuyler has been a part of most of them. The SLP with whom she’s worked remotely has had the most interesting perspective, because she’s never really communicated with Schuyler verbally. They’ve communicated via text message mostly, and so the Schuyler she sees is something a little like the fully realized communicator I’ve always imagined her to be one day. As if to bring the point home, she spoke to Schuyler on the phone the day before the meetings began. She got the verbal Schuyler, just brief words, yes and no and bye. She witnessed the kind of verbal expression that has served Schuyler so poorly at school for the last two years.

There has been so much conversation, so many choices to be made, all focused on enabling Schuyler to have the opportunity to fully realize the potential of the technology that so many people worked so hard to provide to her. That technology has changed her life. The early years are crucial to language development. It was almost too late when she first started at the age of five, and we did what we had to do to give her that tool before the doors slammed shut for good, pride and principles be damned. I would do it all over again, except years earlier.

Time was running out for Schuyler. Time is always running out for Schuyler.

So we have the conversations, and she joins them now. One day, she’ll lead those conversations, and she’ll do it with a voice that’s strong and autonomous and eloquent. There’s a lot I’ve gotten wrong with Schuyler, and more that I will screw up in the future. But these conversations? We’ll have these until our voices crack. Because ultimately, if we get this right, these conversations will begin and end with her.

Article HERE.

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