It's last October. One year ago. We're in a bit of a disagreement with Tess's speech pathologist at her school. Let's call her Roxanne. (That's not her real name.) And the disagreement is not getting resolved. We're clashing. The thing we disagree about is what system to use for Tess. For communication. Roxanne swears by this thing called PECS. PECS stands for Picture Exchange Communication System. It's a bunch of laminated cards on stiff cardboard, all with pictures on them, images of bubbles and chicken and whatever. And the idea is that your nonverbal kid--Tess in this scenario--will use those PECS cards to tell you what she wants.
Problem is, PECS doesn't work for Tess. Never has. They tried it at her old school for years, and the same thing happened every single time. She'd pick up a card, not communicate at all with it, and simply chew on it. She didn't look at the pictures, or grasp that it was the key to getting what she wants, or any of that. I swear, the damn cards might as well have been beef jerky, the way she chewed on them.
So in October 2015, Roxanne is all about PECS. She says PECS is the key to helping Tess. We say, "No, Tess doesn't respond to PECS. Let's try something else."
Roxanne persists, though. So much so that when we take Tess to see an AAC expert at Boston Children's Hospital, we still haven't resolved this disagreement. We are still not on the same page.
Okay, what am I talking about? Lemme explain before I continue. AAC stands for alternative and augmentative communication. AAC is designed to help unlock language for nonverbal kids like our Tess. The AAC expert we went to see was Alycia Berg. She's known Tess since about age 1 or 2 and has helped us a lot in figuring out this language stuff.
I write to Dr. Berg before our visit. I write in October, even though we aren't scheduled to see her until December. I write because I want her to know where we're at--that Tess's language has stalled, and that her school is pushing PECS but we don't think it's the right thing for her.
Dr. Berg receives us in December. She is instantly connecting with Tess and talking with her and getting responses. We dial up Roxanne back in Maine, who's attending the visit by video conference. And Roxanne goes right into the pitch for PECS. Tells Dr. Berg that PECS is the way to go for Tess. As if we've never told her otherwise. My wife and I are frustrated, but we remain quiet. We want Dr. Berg's opinion. She doesn't say much at first. She sets up Tess in a chair at a low desk. She puts some PECS cards in front of Tess. And we, and Roxanne, and Dr. Berg, all watch, as Tess plucks those cards off the table, one by one, and without hesitation, without so much as a glance at them, puts them in her jaws. Chews them up. Like beef jerky. And leaves them, in a drooly crumpled heap, under the desk. And Dr. Berg says: "PECS doesn't work for Tess. We should not use PECS for her."
Because of Tess's visual challenges, she needs something more. Something that's backlit, like it is on an iPad screen. The PECS cards? Not backlit. That's why to Tess they're beef jerky.
This Dr. Berg visit is the culmination of many years of failed communication attempts. Push-button switches that we mounted on surfaces in our home, within reach of Tess, so she can push them and the buttons can say, "Drink," or "Potty," or "Outside." That went nowhere. The switches were screwed on securely, but she ripped them off and used them as chew toys. Or the GoTalk series, a half-inch thick board about the size of a sheet of notebook paper, with four large sort of window cutouts in the middle, and a slot on the side, where you could slide cards in and out. The cards were context-based, so during mealtimes, you'd have all the foods you were serving, and outside you'd have the slide and the swings and all her options, so she could push the picture of the thing she wanted, and a voice would say that thing. Except that if you're Tess, you have no interest in the pictures or pushing them or any of that shit. Instead, you want to pull at the surface of the GoTalk, trying to yank off the crosspieces between the pictures, and when that fails, you gnaw on the side of the device, as your hand brushes the buttons and it accidentally says, "Slide. slide. slide." Nothing helps with any of these methods. No amount of redirection, no oral stimulation, no wearing of Chewelry to keep her mouth busy.
Thus, a communication device with a smooth, light-up screen seems like the only possibility. And we get started immediately, and we work for months with Roxanne to get Tess to use the device.
And that's why it's such a huge surprise to sit in this most recent IEP meeting and have Tess's current speech pathologist--someone I'll call Melanie--tell us that she's been using PECS in first grade with Tess this year. PECS. The cards that Tess has never done anything with except chew up and spit onto the floor.
I hear this and I am unhappy about it. Melanie seems well-intentioned. Melanie is about my age, maybe a little older. She has short hair and is hyper-focused and wears glasses, and she takes her time speaking. I've begun this IEP meeting by showing my binder to the group, because it has a huge picture of Tess on the cover. Last week a school administrator told me to do this, since it will remind everyone in the room why they're there, that there's a person at stake here.
It is clear from the get-go, however, that Melanie needs no such reminder. She begins her update by thanking my wife and me for the opportunity to work with Tess. She tells us that it's been an honor. And this goes quite a long way with me. I realize that up to now, most speech pathologists in our town's public school have never seen anything like Tess, in terms of communication challenges. What she has doesn't have a name other than "mixed expressive-receptive disorder," which means she can't speak and also has trouble understanding what we say. It's one thing to be locked in, to be nonverbal, but otherwise have it together cognitively and receptively to get what's going on. You get yourself a speech device, something that lets you type or use eye gaze to point to letters and words and phrases and voila. You can communicate. People ask you your thoughts and dreams and wishes and you use technology to answer them. You're Stephen Hawking. You're the protagonist of the ABC sitcom "Speechless." But if you can't grasp what people are saying, if you're unable to follow simple directions, and if you generally don't even respond to your name, if that's where you are, it's a whole different deal. And I get that. I get that signing up to be a speech pathologist in a public school means that you aren't expecting someone super hard like Tess. Instead you expect to help kids with mild speech impediments, get them to drop their lisp or say their Rs better.
But now that Melanie has been assigned to Tess, and she's supposed to be working on communication goals, I gotta say, the word PECS in that meeting makes me a little nuts. And now that I think of it, Tess's device has been coming home in the afternoons with her breakfast foods still on the screen. Which means it's been quite a while since Melanie used the device at all with Tess. I realize that it's been all PECS, all the time. One of the worst ideas ever for our girl. I am livid.
Before I can say anything to protest this, though, cooler heads prevail. One cooler head in particular. My wife's. (Side note: we've learned that Mike, the special ed director in our district, doesn't respond well when I speak. His first impulse is to go nuclear and lawyer up, which will only delay things for Tess. So it's better in general when my wife speaks at IEP meetings.) And in this meeting, when the word PECS has just made me irrationally furious, my wife speaks up. She goes to a place that I hadn't thought of. She asks a great couple of questions of Melanie. She says, "Is there some reason that you're working on PECS with Tess? Is there some skill that Tess is supposed to gain from it?"
Melanie explains that Tess is firmly in the prelinguistic stage of language development. She's 6, but she's like an infant who hasn't acquired meaningful words yet. She gets what she wants through nonverbal means, like pointing and touching. Without doing this PECS work, without going through this, Melanie says, Tess won't be able to distinguish among the images on her device. Every button will look the same to her. And she also won't understand that communication requires a partner.
Tess has been pushing buttons fairly reliably on her device for a while. But we have suspected that it's only because she's memorized the locations of the buttons that get her what she wants. They're all in the middle of the screen, and they never change positions. Chicken is always upper middle left. And she eats a ton of chicken. The button for sweet potatoes is right next to chicken. It's a staple too. So she's just memorized where those two buttons are, and she keeps hitting them. But it seems that she doesn't actually know what they mean. It's not like she's saying to herself, "I've had enough chicken for the moment, I do believe I'd like some sweet potatoes now." Instead she's figured out, okay, this zone of these buttons up here in the top row will get me food as long as I keep pushing them. And the way we know she isn't distinguishing among the buttons is that the ALL DONE button is nearby. And she's constantly pushing that one, even when the meal is just getting underway. (Side note: I know the right move is to make the ALL DONE button unavailable, but it involves editing the template of the app, and we're not certain that taking the button out altogether is the right move, since we do use it to tell her the meal's over, and also because I'm not confident enough to mess with templates, for fear that I will screw up the entire app forever.)
In other words, even though the mere mention of PECS in this IEP meeting makes me feel like I'm taking crazy pills, Melanie is making sense. She's right in that Tess isn't discerning between images. And we've been working with a device for nearly a year now. Shuffling between a few different apps, but nevertheless it's coming up on a year. And maybe this is the way to go. Maybe Melanie is right about why Tess is stalled.
There is good news and bad news. And also bad news. And finally some good news.
First, the first piece of good news. Melanie is proposing this thing called PMT. Prelinguistic Milieu Teaching, or PMT. It's all about helping Tess understand what to do with her communication partner using gestures and eye gaze and vocal sounds.
The bad news is that Melanie is leaving. She has only been filling in for the summer and beginning of the school year, because Tess's usual speech pathologist, Roxanne, is returning from leave. We wish Melanie could stay. We like her! She seems to have an unusual amount of energy for this stuff. So will this PMT idea continue? Hard to say. We've never heard Roxanne mention PMT, and she worked with Tess all last year in kindergarten. I have visions of the school spending the entire rest of the year on PECS and getting nowhere with Tess. Ahhhhh crazy pills!
Another piece of bad news: PMT is all well and good, as long as you have a kid whose vision and hearing work okay. But Tess's vision and hearing most definitely don't work okay. She has cortical visual impairment, or CVI, and we think she has an auditory processing disorder too. Which means that even if her eyes and ears work fine, there's a problem when her brain tries to interpret that visual and auditory information. She can't process it. So if, for example, PMT focuses on whether Tess can use eye gaze with her communication partner, I can tell you right now, that probably ain't gonna happen. For this reason, you gotta adapt the PMT. You go with this thing called A-PMT, adaptive prelinguistic milieu teaching. There's an expert out in Kansas who wrote a paper about 10 years ago, a woman named Nancy Brady, who outlines some methods about how to adapt stuff. Her study even included a kid with CVI. Nancy Brady's all about interventions that help kids like Tess, even if she can't see or hear like other kids do. So in getting Tess's attention, rather than capturing her eye gaze or calling her name, you'd tap her hand to get her attention. We've traded some emails with Melanie since the IEP meeting, and we shared a bunch of videos, plus the Nancy Brady materials with her, and Melanie is enthusastic and very open to these ideas. But it's clear that there hasn't been any adaptation of PMT for Tess so far this year. Sigh.
The final piece of good news is that Tess is in the midst of being evaluated by an expert in augmentative and alternative communication, a guy right here in Portland named Mark Hammond. That is his real name. It's his office that we take Tess to every week. He's an older guy, who's unfazed by Tess, because you can tell he's seen it all. He wears sneakers with a shirt and tie, and his face will burst into a wide smile every so often, sometimes for no reason. He's kind to Tess but tough on her at the same time. He's a wealth of knowledge. If you go to his website, it says, " Functional communication to meet an individual's medical, social, and emotional needs is a human right."
We've asked our school district to hire Mark to figure out what device would be best for Tess, to get us moving forward. Mark isn't at the IEP meeting. He hasn't been invited, and his report isn't ready yet. When the school district hired him, it didn't involve him in this IEP or try to get him to do the report before today, even though this date's been on the calendar for weeks.
Without Mark's input, we can't formulate the right speech-language goals for the IEP. Creating those goals and starting to work on them now would be a waste of time. It'd be like getting a crew together to build a road to Cleveland, and spending a few months hard at work constructing that road, only to learn down the line that there's this big thing in the way called Lake Erie.
I don't want to be an expert. I have enough things that I need to be an expert in. I have a job. I'm a disability rights lawyer, which is a relatively new field for me, and I'm trying to get up to speed on disability rights law. My wife has a job. She's a gastroenterologist. We don't have time to become experts in these concepts of language acquisition and prelinguistic stages and such. We need someone else to take the lead. We need someone else to drive this thing, someone who gets the picture about Tess, and understands that not only is she late to the language party by four or five years or more, she's gonna keep being late until one of these methods accounts for her visual and auditory deficits. She's getting help on all fronts--a teacher of the visually impaired, and two SLPs, and instructional goals from her special ed teacher, and all kinds of people working to help her. But we're hoping Mark can tie all this together. To cook up a strategy that makes sense, that's gonna make her successful. Who will this be? Will it be Mark? Or Melanie? Or someone else? Will we ever get to Cleveland?