Tooth and Claw (and an IEP)

What to say this morning, in the aftermath of Schuyler’s IEP meeting last Friday?

It was the best of times, it was the worst of times.

I thought it might be a bad one going in, actually, one in which we were going to have to fight tooth and claw for what we wanted for Schuyler. It has become more and more clear that Schuyler’s assistive speech technology use has been neglected, a fault for which I take as much blame as anyone. Her special education team has been doing fantastic work, but a kind of dependence on Schuyler’s verbal speech had made all of us a little lazy.

Schuyler using verbal speech sounds like a good thing, a great thing, even. Almost a decade ago (God, has it been that long), when she was diagnosed, the idea that she might one day verbally communicate in school would have felt miraculous. But there’s a tough reality. Schuyler’s verbal speech can usually be deciphered when it’s in the context of a conversation where her responses can be anticipated. In reactionary situations, Schuyler does pretty well. But when she wants to express a thought that is independent, or which is complex, her verbal speech fails her, badly.

The problem with school is simply that almost all of her conversations now are contextual. For her teachers, that means that she can go all year using nothing but her verbal speech and do pretty well. For her classmates, however, it means that for Schuyler to be comprehended verbally, she has to speak in very simple sentences. Schuyler dumbs it down so that she can be understood. It’s easy to miss that she’s not doing very much in the way of independently generated, complex communication.

Schuyler is finishing seventh grade. The days where that kind of communication will adequately serve her are critically numbered. I’d argue that they’ve probably been over already for some time.

We went into this IEP meeting asking for a lot, requesting no less than a total shift in the philosophy behind her AAC usage. The benchmark for success would no longer be that she managed to convey her simplest points through verbal speech, or that she could use her iPad to clarify when that speech failed her. Her iPad would no longer be a parachute. Schuyler would be encouraged, by all her teachers, to use AAC as a primary mode of communication. And we requested an outside consultant with whom we have been very successfully working for the past few weeks, to facilitate a workshop and to help lead this sea change in AAC philosophy, not just for Schuyler but possibly for those who come after her.

As we discussed the way that the iPad provides an opportunity for comprehensive communication that is impossible for Schuyler when she uses her simplified verbal communication, I handed out copies of a poem (with Schuyler’s permission) that Schuyler had written two days before. Her band director and I had discussed possible ways to get Schuyler to embrace her creativity, and the suggestion was made that if Schuyler could write a poem (something she’d toyed with before), the director would turn it into a song for her. When I floated this idea to Schuyler, she pounced on it.

This is what she created as a result.

When I shared the poem, I asked the rest of her team if they thought Schuyler could ever communicate the things in this poem using just her verbal speech. I asked if they’d known such a poem was even in her. I think Schuyler’s words had an impact, much more than anything we said. In her way, she self-advocated like a pro.

So we knocked all this around the meeting, and we came away with what felt like small victories at the time. We rejected the speech therapist and assistive technology team’s goals for language and speech, and set a date for another meeting later this month to amend them further into something comprehensive and measurable. So essentially we punted on the hard stuff. And our request for a consultant-led workshop is going to be considered, which might be a polite way of saying that they’re going to spend the next two weeks coming up with a solid way to say no. I think we’re going to have to fight hard for this one, in no small part because there’s a perception that we’re asking for someone to come in from the outside to facilitate something that the assistive technology team should have been doing.

Which might be true enough. Toes might be stepped on, I concede that. It just can’t be our problem if they are.

Overall, it wasn’t a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we’d resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.

Did we achieve what we needed to? We’ll find out soon enough. Teeth to remain bared a little longer; claws to remain sharp.