It's mid-July 2016. Hottest summer on record here in Maine. Tess is having a blast, going to her extended school year program four days a week. There's just one problem: she can't talk to us. After a whole spring of having a talker device, her device has gone away. This is because...it got run over. For real. The talker was in our girl's schoolbag, at the edge of our driveway, just after she got off the bus. And our BHP had put the bag down, but forgot to put it in her car, and she...drove over it.
The device was an iPad. Those things can take a lickin', but if you subject it to the weight of your car, it cries uncle. Its screen shatters. Side note: it does, however, still turn on and function perfectly well. It's just a question of whether you're okay with tiny shards of glass possibly coming out as you point and swipe on the screen. Which we were definitely not okay with, given Tess's propensity to eat every goddamn thing she comes across.
Anyway, without a device this summer, Tess gets pissed off. She's used to being heard and understood. Lacking any other method to talk to us, she begins pinching and biting to get what she wants.
We know she needs a new device. And the question becomes, what device should we get? T's outside SLP is saying, you know, we don't necessarily need to just get another iPad and load it up with the same app she's been using. The app's called Proloquo2Go, and we've found there's good and bad. The good is, Tess knows it, she can push the buttons, they're nice and big. It's got a voice that goes with it, so if you push a button, it'll say nice and loud: CHICKEN. Or EGGS.
The bad? T is inconsistent with the buttons. It isn't always clear whether she grasps the meanings of the buttons. Sometimes it appears she's just pushing whatever, in order to make shit happen. Like, a meal is just getting underway, but she'll hit ALL DONE, like, five times in a row. And we know she doesn't mean that. In fact, if you grant that request and actually make the dinner be all done, she'll go bananas and try hard to kill you. Another problem with the iPad and this app is that there's this delay. Often T will hit a button and it'll take a second for the pushing to register. The sound won't come out right away. By the time it does, Tess has already lost patience. She hasn't gotten that immediate feedback from the button that she needs. Other times it's not a delay, there's just no sound at all. She'll push something, and you'll see the button on the screen go down and pop back up, like buttons do in real life, but no sound will come out. T puts out all the effort of deciding what to say, of locating the button on the screen, isolating her index finger enough to hit that button and not like six other buttons at the same time, and--in her mind, anyway, nothing happens.
So T's SLP, not the one from school, but the one we take her to privately, has a different device in her office, and we start using that one during Tess's sessions, because we don't have any other choice. And Tess is crushing it with that other device. She's not hitting ALL DONE. She's nailing each button, every time. Saying what we know she means. And her SLP says, let's do a new evaluation for AAC, which stands for augmentative and alternative communication. AAC, it's called. It's the science of these talkers. It's about giving someone like Tess, who's nonverbal, the tools to talk. And we haven't had an eval since last December. Tess has grown cognitively since then, by fricking leaps and bounds.
We ask the school to hire our SLP's company to do the eval. That company is called Mark R. Hammond Associates, right here in Portland. You'll notice that we're not asking the school to pay for a new device. We just want them to arrange the consult, so the evaluation can happen. My wife and I ask the SLP: why do we care whether the school does this? In other words, what if we just do it on our own, rather than waiting for the school to get on board and pay? It can't be that expensive, and if it's gonna take forever, can't we just do it ourselves now, in mid-summer? Strike while the iron is hot? Be the early bird and get the worm?
Tess's SLP explains: yeah, you could. But here's the thing. If the school arranges it, then everybody who works with Tess--from her school SLP to her special ed teacher, to her PT and OT, to her ed tech--everybody is on the same page. Everybody gets trained to use the new app. And that's why that's the best option for Tess.
So I email our special ed director. I've been calling him Mike on this blog, but that isn't his real name. And I say, hey, here's what we're seeing. Tess is biting and pinching. She's regressing in her communication. We really need to do this eval and get her a new device pronto. I specifically tell him, this can't wait 'til fall. And to his credit, as a sort of solution for the time being, he immediately gets her another iPad from the school and loads up the old app, Proloquo2Go, just while we figure shit out. And he says he's gonna call Mark Hammond, the place that we want to do the eval.
Welp, a couple weeks go by. The extended school year is about to end. There is no word about the device or the consult. I email Mike the special ed director again. Hey, any word? I ask. He's been saying how he wants to wait for the full report from Joan. If you're a regular reader of this blog, you'll recall that Dr. Joan is the psychologist who's been evaluating Tess for autism, and she concluded that Tess does indeed have autism. In my email to Mike, I say: hey, I know you're waiting to hear from Joan, but that's not a good reason to wait on this eval. In fact, I've talked to Joan and she's telling me full steam ahead, let's get this new device in place over the summer, when it's much easier for Tess to make the transition.
Mike tells me he's on it, that Tess's school SLP will be in touch soon. We are moving forward, he says.
A month later, nothing has happened. Tess's extended school year is over. There's been radio silence from Mike and nary a peep from the school SLP. It's the eve of the new school year.
So we email Mike again. We demand an IEP meeting to talk about communication. We haven't heard from you, we say. We're not moving forward, in spite of what you said. And you know, side note: I gotta say, one thing that makes me insane is when people take something that is untrue, and just keep saying it, in an effort to make it become the truth. That doesn't work on me. Merely saying we are moving forward doesn't mean that we are.
So anyway, a week later, there we are. In an IEP meeting. Tess's whole team from the school is present. In case you've never been in an IEP meeting, let me tell you what it feels like. It is an endurance sport, only instead of doing physical stuff, you're listening. You're listening harder than you ever have in your life. If you don't, if you tune out for even a minute, you risk missing important statements and decisions. And what gets said doesn't naturally follow from what's been said so far. That's why you can't tune out. Like, just when you're pretty clear on the general feeling in the room, and the way the group is going, in terms of what should happen for your kid, and you're almost lulled into not paying attention while they go through the formality of announcing the decision or findings, then someone in the group will lob in an observation or idea from left field and change the whole deal.
It's like you're a football team, and it's pretty clear that the other team can't stop the run, so you huddle up, and the quarterback is about to call the play, and it's gonna be pass or run, and you're waiting for him to say run, but then instead he says, "Let's all strip off our uniforms and run naked up into the stands, singing the national anthem of Mozambique!" It's like, what in the fuck? Where is this coming from? How did we get here?
And that's exactly what happens in this meeting. The play that gets called in our IEP meeting makes exactly that much sense--the naked-in-the-stadium, Mozambique-national-anthem play.
We're all in agreement, everyone nodding heads around the table. Mike, who's running the meeting, has actually surprised my wife and me with how heartily he agrees that Tess needs to be evaluated for communication, and that that needs to happen soon. I'm starting to wonder what the big deal was. If we all agree, then why'd you make us throw our toys and call this meeting and inconvenience everybody?
And really, the meeting turns out to be a great thing in a way, because Mike has gone to the team and asked each person who works with Tess what they're seeing, communication-wise, and what questions they would have for the evaluator in picking a device and system for Tess. We've talked about Tess's vision and hearing, her lengthy processing time for each of those, the mechanics of her learning to point, to isolate that finger and hit the button she wants.
And then comes the weird call. The lob out of left field. Mike announces that he's not going to hire Mark Hammond Associates to do Tess's evaluation. Well, he might. Mark Hammond is just one of the providers that he's thinking about hiring for this. There are two others. And there's this bizarre moment when it becomes clear that Mike is going to make this decision. Mike, who's not a speech pathologist, who doesn't have any background in AAC that we're aware of. He's gonna make the call who to hire. By this point in the meeting, I am wiped out. I can't even grasp what he's saying. It just doesn't make a damn bit of sense. I dimly feel an alarm going off somewhere deep in my brain, something telling me to object, to say essentially, WTF?
But before I can even form that thought, my wife is speaking. She's taking Mike to task. She's asking him, why are you the one deciding this? Why isn't this our decision? And what is your experience that qualifies you to make the decision? And what criteria do you plan to use?
It is, quite simply, my current favorite moment in any IEP meeting, which, side note: is like talking about the best part of your root canal. But seriously, it is fantastic the way my wife does this. Later, in telling this story to our son, I will describe it as, "when she used her mom voice."
And it has the desired effect. It catches Mike off guard at first, and he stammers something about how if the school is footing the bill for the eval, then he has to choose the provider. He elaborates on the other two providers and explains how it could actually benefit Tess to have someone do the eval who doesn't know her. Most important of all, my wife has let him know that even if this is how it has to be, we will not accept just any old decision. There better be some data. It better be the best damn AAC person in town, and frankly, we don't see how that's someone other than Mark Hammond and his team, but we'll give you a shot at this, Mike.
He promises that we have a right to disagree with his decision, and ask him to revisit it, after it comes out. But for now we are satisfied.
The meeting ends abruptly. My wife and I each separately shake Mike's hand and thank him, and tell him we're grateful. Because we are. We are grateful. We wish it hadn't come to this, but now that it has, we're hopeful about our next move.
We are in the hall afterwards. Tess comes and meets us with her ed tech. We linger for a while there--Tess, us, her brother, and a bunch of her team. Her teacher and her special ed teacher. Her PT and OT, her teacher of the visually impaired. The new principal of the school, who'd been in the meeting with us. And there are others. Others who hadn't been in the meeting, but who emerge into the hallway, pulled in by the sounds of Tess laughing and us laughing. Our girl is putting on a show, you see. She loves lanyards. If you have an ID or cardkey or what have you, and it's on a lanyard around your neck, she can't resist. She wants to pull it and make it her own. And there are literally like ten lanyards on the people surrounding her there. She can't believe it. She pulls on one, and then spies another, and pulls that one for a while, and then moves on. All the while she's laughing her ass off. She is in heaven. What an awesome school. What a piece of luck, that this place is less than 5 miles from our house. And there are all these people gathered there who care about Tess. Because they really do. They think about her so much. We get emails at all hours. They don't punch out at 3pm every day. She is part of them now.