In which I impart actual useful information

I asked some of the amazing people I've met at the Prentke Romich Company if they could point me to studies actually illustrating that AAC use contributes to overall language and/or speech development, not just providing a voice but actually aiding in the development of other communication methods, including verbal. I should have known they would come through. One of the things I love about PRC is that the people who represent them in the field aren't sales representatives. They are SLPs and therapists, they are the same people who fight our monsters and they do so with real weapons, the ones they believe in.

And when it comes to AAC and its implementation, they know their stuff.

Anyway, here are some direct quotes from the book Exemplary Practices for Beginning Communicators: Implications for AAC by Joe Reichle, David Beukelman, and Janice Light. I'll have more to share soon.

(There are also some further resources listed at the end, so you can... Read More About It!)

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1.) "Although some existing research literature and recommended practices data support the notions that even very young children and other beginning communicators can use and benefit from AAC (e.g., Pierce, 1999; Romski & Sevcik, 1996), some professionals still believe that AAC is a last resort to be tried only after all other interventions have failed and the individual is still not talking (Romski, Sevcik, & Forrest, 2001). This belief may contribute to why AAC is often not incorporated into prelinguistic intervention strategies. Typically developing children primarily rely on gestures to communicate until about 12-13 months of age, when they increasingly use speech for communication (Goldin-Meadow, 2000). Using a developmental perspective, AAC interventions (e.g., gestures, devices, switches) can be viewed as tools to develop prelinguistic skills and set the stage for later vocabulary development regardless of whether the individual eventually talks."

2.) "Previously, it was assumed that individuals need to demonstrate the prerequisites of sensorimotor stage V for sufficient symbolic understanding to begin to learn how to use AAC (e.g., Chapman & Miller, 1980; Owens & House, 1984). It was later recognized that individuals can acquire some of the presumed prerequisite skills much earlier through the functional use of AAC in naturalistic environments (Kangas & Lloyd, 1988; Reichle & Karlan, 1985)."

(Quote specific to speech output devices:)

3.) "Romski and Sevcik (1996) argued that the use of a speech-output communication device was a critical component of their participants' successful use of SAL (System for Augmenting Language). They contended that the speech output provided a link to the natural auditory world for participants. Yet, no direct comparison of SAL acquisition (speech+symbols) with learning symbols alone was provided. Schlosser, Belfiore, Nigam, and Blischak (1995) conducted a study on three individuals with severe mental retardation who would have been considered beginning communicators. The researchers compared the participants' acquisition of visual graphic symbols and speech output with the acquisition of visual graphic symbols alone. They found that the speech output + visual graphic symbols resulted in more efficient learning with fewer errors than the visual graphic symbols alone. These results support Romski and Sevcik's argument that speech output can play a critical role in AAC language learning."

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Pierce, P. (1999). Baby Power: A guide for families using assistive technology with their infants and toddlers. Chapel Hill: The University of North Carolina Press.

Romski, M.A. & Sevcik, R.A. (1996). Breaking the speech barrier: Language development through augmented means. Baltimore: Paul H. Brookes Publishing Co.

Romski, M.A., Sevcik, R.A., & Forrest, S. (2001). Augmentative and alternative communication in inclusive early childhood programs. In M.J. Guarlnick (Ed.), Early childhood inclusion: focus on change (pp. 465-479). Baltimore: Paul H. Brookes Publishing Co.

Goldin-Meadow, S. (2000). Beyond words: The importance of gesture to researchers and learners. Child Development, 71, 231-239.

Kangas, K.A. & Lloyd, L.L. (1988). Early cognitive skills as prerequisites to augmentative and alternative communication use: What are we waiting for? Augmentative and Alternative Communication, 4, 211-221.

Reichle, J. & Karlan, G. (1985). The selection of an augmentative system in communication intervention: A critique of decision rules. Journal of the Association for Persons with Severe Handicaps, 10, 146-156.

Schlosser, R., Belfiore, M.A., Adamson, L.B. (1995). The effects of speech output technology in the learning of graphic symbols. Journal of Applied Behavioral Analysis, 28, 537-549.

Doctor Leaf responds

I got a response back from Dr. Leaf, which he gave permission for me to print. He followed up this response with another, expressing his displeasure that I posted my own letter before he had a chance to respond, thus opening himself up to criticism from all of you and further confusing the issues without having a chance to respond. He's got a point, actually. (Honestly, I didn't really expect a reply; I figured my email had enough of a "random kook" vibe to go straight to the delete folder.) My sincere apologies, Dr. Leaf.

I have to say, in all honesty, that I'm not sure that I agree with him that his quote was taken entirely out of context. In reading his response, however, it strikes me that the wording in USA Today ("If we could get children to talk without using technology, that would be our preference.") is a pretty indelicate distillation of what he says here, and I do agree that it doesn't represent his position very clearly.

Most of all, I appreciate that he took the time to respond, and I'm happy to pass that response on to you.

And yes, I do expect the rest of you to address me as Dr. Rob from now on. I mean it. I didn't not go to medical school so you could call me Mister.

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Dear Dr. Rummel-Hudson,

I appreciate the opportunity to respond to your concerns. All too often people are not given a chance to respond and even sometimes create controversy perhaps when there is none.

Unfortunately, my quote was taken out of context. As I told the reporter, I believe augmentative devices are very useful. It is the reason why I often recommend schools and parents utilize any devise that will give their children the opportunity to communicate their desires and equally important connect socially with their parents, brothers and sisters and friends.

However, it would be parents’ and professionals’ dream for their children to be able to communicate without augmentative devices, just as we would prefer for children to be able to be successful in school without needing an aide. Or we would prefer that a child would not need medication to control their behavior. But when this is not possible or if it is a lengthy process then anything that will help our children is a godsend!

I am concerned that in the world of Autism the expectations are woefully low and too often people settle for a prosthesis when a child could actually learn the skill. In our clinic we find among preschool age children about half of them already have functional speech even before treatment and this is consistent with what the research literature shows. The research also shows that of those remaining 50% who are nonverbal, the vast majority of them can develop meaningful speech with intensive early intervention and will not require AAC devices (or PECS, or sign language, etc.) either as a means or alternative to vocal speech. This has been our clinical experience as well. I encounter so many families who have been told to simply accept their child’s handicap and are discouraged from seeking treatment that could make an enormous difference in children’s lives. It’s amazing to see how excited people become over a new device and fail to recognize that the it might not be necessary.

We think children deserve to have the highest level of independence possible. If that turns out to be best achieved through use of state-of-the-art AAC, I am thrilled. But if a child could be talking and is not given the opportunity to access state-of-the-art education and treatment, I am greatly saddened.

Nothing I have said should detract from the joy of parents and accomplishments of children who really do need alternate modes of communication.

Regards,

Ronald Leaf
Autism Partnership

Calling out Doctor Leaf

Ronald Leaf, director of Autism Partnership, a private California-based agency, says he prefers to help autistic children such as JW learn how to navigate their world without gadgets. "If we could get children to talk without using technology, that would be our preference," he says.

("iPhone applications can help the autistic" - USA Today, May 28, 2009)

Dear Dr. Leaf,

I was saddened and disappointed to read your comment in the USA Today article about the Proloquo2Go application for the Apple iPhone and iPod Touch. I felt it was a glib dismissal of a technology and a communications philosophy that has helped and will continue to help thousands of young people who are unable to speak but deserve to be heard.

I am the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter, a memoir that tells the story of raising a little girl with a rare brain malformation that leaves her unable to speak. The book ends, and her future begins, when she is given an augmentative alternative communication device that helps to facilitate her speech. Four years later, because of this technology (in her case, a Vantage Lite, produced by the Prentke Romich Company), Schuyler spends the better part of her day in a mainstream third grade class alongside her neurotypical classmates. She recently passed the modified TAKS test (the No Child Left Behind component for the state of Texas) and is on track to continue her schooling and even graduate from high school. Where four years ago, she was pushed off to a special education Life Skills class and was given no prognosis for an independent life, Schuyler may very well get a chance to live whatever life she chooses. None of these possibilities were placed on the table until she had the ability to speak and to learn how to construct language. All of this, because AAC technology gave her a chance.

Schuyler is hardly alone in her achievements. Her story is only unusual in that she was ultimately able to receive the speech device that could help her. She and her fellow AAC users represent only a fraction of those nonverbal kids who stand to benefit from this technology. AAC helps thousands of kids and adults find a voice and overcome a wide range of disabilities, from Schuyler and her polymicrogyria to kids with cerebral palsy or, yes, autism. As you are no doubt painfully aware, the frustration of being unable to speak can be as crippling to a child as any physical or mental infirmity. I have seen it time and time again, children who were not just nonverbal, but closed up inside an internal world of their own, unable to make the basic human contacts that they needed so desperately. All because they had to struggle simply to make their most basic needs known.

Kids who use AAC technology gain more than words on a "gadget". (In all fairness, that was a word used by USA Today, not yourself.) They find a door into a larger world, a door once locked but now ajar and ready to be kicked open. Those of us who have watched AAC technology at work have found that when these kids are suddenly able to speak through the use of electronic assistance, they show dramatic improvement in other areas of communication such as sign language and even verbal speech. This effect is of particular interest, and promise, to children on the autism spectrum.

"If we could get children to talk without using technology, that would be our preference." As the parent of a child who can't speak but who has a world of things to say, I must confess that I'm baffled by that remark. If you are saying that you'd rather see these kids use their natural voices than a computerized voice, then of course I agree. But what if the path to finding that natural voice involved technology, as is so often the case? Would you dismiss that technology so casually if there was even a chance it could help?

There's more than just a chance.

Dr. Leaf, you were quoted by USA Today because you were perceived as an expert in your field. I sincerely hope that you will take this opportunity to educate yourself about AAC technology. The next time you are called upon for answers and for wisdom, you might just change someone's life, and give them a voice.

Robert Rummel-Hudson
Plano TX

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Update: Dr. Leaf's response...

Pinkessa and the Purple Cow

A short video of Schuyler using her device at dinner. Nothing earth-shattering, just a glimpse at how she uses Pinkessa in a normal dinner setting.

Big Box 2.0

This isn't a demonstration video of Schuyler using her new speech device (which she has named "Pinkessa", by the way). She doesn't really do much here other than play around with it a little. It hasn't been programmed for her yet, and of course we still have to figure out how all the new features work. Our local PRC rep is going to go to Schuyler's school today to set it up and show her teachers the new stuff, but for the time being, I think Julie and I are on our own. That's fine; we're pretty smart people.

No, this video is purely for the joy of watching Schuyler see her new Vantage Lite for the first time. For a nonverbal kid, she says "This is so cool!" pretty damn clearly.

Yesterday was a good day.

Pink.

It is pink. It is very very pink. I mean, you see photos in a catalogue and you say "Oh, yeah. That's pink." But in person, up close? It is crazy cool Schuyler pink.

Schuyler hasn't seen it yet; she's not expecting it until Friday. She'll be home from school soon, and I can only imagine how messy it's going to be when her head explodes.

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Update:

She digs it. A LOT.

Of Loopholes and Boxes of Pink

Schuyler and the PRC Vantage Lite
Originally uploaded by Citizen Rob

A week from now, a box should be arriving from Wooster, Ohio. Inside that box will be something that I wasn't sure we'd see any time soon, and it will be arriving under very different circumstances, in a differently life even, than the last box we received from Wooster.

The box will contain Schuyler's new Big Box of Words.

When I mentioned the fact that Schuyler had been approved for funding for the device, I got a lot of questions about it. I thought it would be helpful for some of you if I devoted an entire post to this.

First of all, the device itself. It is the Vantage Lite, built by the Prentke Romich Company, and it is basically the next generation of what Schuyler has now. It will communicate the same way, using PRC's Unity® language system, but with a lot of new features and capabilities. This is what I'm reading (and possibly getting some of this wrong, sorry if my information turns out to be less than accurate):

• The Vantage Lite adds a vocabulary setting -- a 60-key sequence -- to bridge the gap between the simple 45-key setting that Schuyler started on and the 84-key she uses now. Not a benefit for Schuyler, who has been using the 84-key setting for most of her time with the BBoW, but I think it's a good transitional step. That change was a big one and took a while for Schuyler to become comfortable with.

• It has 64k graphic capability, up from 256 colors on Schuyler's device.

• It has something new called Visual Scenes, which allows the user to show large pictures superimposed on the key layout. Say Schuyler has a photo of her family that she wants to display. In Visual Scenes, that photo can take up the better part of the screen, with perhaps some buttons beside it that can be programmed either with words or phrases describing the scene or giving further information. Additionally, the key spaces under the photo can be programmed to identify the subjects of the photo and speak them. Click on my fat head in the photo, and the device will say "Daddy". Think of how tagging works in Facebook and you'll get a pretty good idea of how this works. Now the device is more than just a way to speak. It can become an important digital assistant. The possibilities for school alone are pretty amazing. For example, Schuyler can now give oral reports with multimedia in a way that would have been impossible before.

• Vocabulary Builder now allows AAC professionals (and busybody, know-it-all parents) to teach vocabulary in smaller, more manageable pieces. A text file can be imported into the Vantage Lite with a vocabulary limited to whatever the user requires or can handle at that stage. Vocabulary Builder matches that list against its own stored vocabulary, and any words not on that list are masked from the available vocabulary. This simplifies the search task and reinforces the motor patterning for accessing those target words. Again, not for Schuyler, but it might have made the early days easier for her. I can see how it would be a valuable tool, and it addresses some criticisms of the PRC devices that claim it can be overwhelming and difficult to learn. (I don't agree with those criticisms, but I understand where they come from.)

• There's a brighter display with better backlighting. (Might Schuyler finally be able to use her device outside, in the sunlight? Perhaps!)

• It now has something called Simple Toolbox, which is an alternative to the sometimes daunting Full Toolbox. Selecting this option gives you fewer, more often used menus and functions. (I suspect this is an option mostly utilized by parents.)

• The Vantage Lite has built-in Bluetooth. This could be a very big deal. I have to confess now that I apparently suffered some sort of head injury at some point that turned the part of my brain that should understand Bluetooth into a soft, useless puddle in my head. So I can't explain much about it yet.

• The device itself has been redesigned to be more durable and also much more portable.

I'm also pleased to report that it looks much less... medical, I guess. There's been a growing industry-wide recognition of social stigma as probably the greatest barrier to a lot of kids, many of whom resist AAC technology because they feel it calls attention to their disability. That has certainly been the case with Schuyler on some level from time to time. The simple act of making it look more like a kid's other digital devices (including making it available in different colors) might just go a long way towards making it a more welcome part of their life.

Do you want Schuyler to fall in love with her speech device? Make it pink.

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Now, about the funding.

The state of Texas has something called the Specialized Telecommunications Assistance Program, or STAP. It provides financial assistance to people with disabilities to allow them to purchase telecommunications devices and services that allow them to use telephone networks to communicate. Qualified state residents can apply for these funds once every five years. (It was around back when we were looking to get Schuyler's existing device, but the waiting period at that time was six months or more. It's now down to a few weeks. Fewer than three for us, actually.)

So yeah. That doesn't sound like it really applies to Schuyler, does it? Well, the truth is, STAP isn't actually intended to fund AAC devices. It's supposed to be used to buy phone systems for people who have difficulty using the phone. The loophole that allows AAC funding is simple. How can you use the phone if you can't talk? Many AAC devices have been adapted for use with telephone equipment, and those devices are available through STAP, or its equivalent, in many states. And that adaptation is as simple as having an external speaker jack. If you can plug in a speaker, then you can plug in a phone adapter. And if you can do that, suddenly you qualify for STAP.

Every state states should have STAP or a similar program (check with your state's Public Utilities Commission), but apparently many of them won't fund AAC devices, or will only buy very limited equipment. Texas got it right for kids like Schuyler, but they did it by accident, I guess.

And that, my friends, is how every so often, the parents of broken children win. We can't fight the system head on. We look for holes in the Armor of No, and we stab with our rubber swords just as hard as we can.

Approved.

Approved.
Originally uploaded by Citizen Rob

Today we got word that Schuyler was officially approved for a next generation speech device.

Did a state agency really just come through for us on the first try, in a timely manner? I'll truly believe it when this paper voucher turns into a new Big Box of Words. For now, however, we are allowing ourselves a little bit of celebration and a lot of renewed purpose towards helping Schuyler accept and flourish on this unnatural way of communicating.

Besides, the new one comes in pink. God help us all.

Meeting the Big Box of Words, 2005

In Chapter 19 of Schuyler's Monster, "A Big Box of Words", I described a short video I'd taken of then-five year-old Schuyler doing some fundamentals on a PRC speech device. She was waiting for her own Vantage, her Big Box of Words, which was still being manufactured for her. She'd been on this loaner for only two weeks.

I'd thrown together this video because Schuyler's IEP meeting was coming up, and I had a suspicion (ultimately correct, as it turned out) that the Manor school district's technology advisor was going to report that Schuyler was incapable of using the high-end device. I wanted to show the members of Schuyler's support team how she used the device in a number of ways, including some one-hit preprogrammed answers, simple sentences about what she wanted to eat, and descriptions of things like colors that required her to navigate through subdirectories. The video made a huge impression and changed many of the attitudes towards Schuyler's use of AAC technology, although ultimately the Austin area school was a failure and we ended up here in Plano.

As I was looking something up for the speech I'm working on for the TSHA Conference next month, I was surprised to discover that I actually still have that video file. I thought you might like to see it for yourselves, if for no other reason than to see little five year-old Schuyler. This really was the beginning of something important for her, and after all the computer crashes and such over the past four years, I was surprised and happy to see that I still had it tucked away.

* * *

(Excerpt from Schuyler's Monster: A Father's Journey with His Wordless Daughter, Chapter 19 "A Big Box of Words")

OPENING SCREEN: MAY 17, 2005"

Schuyler standing beside table
Me: Hello!
Schuyler: (waving) Hi!
Me: Okay, can you come show me your words now?
Schuyler sits down, in front of her Prentke-Romich Vantage Plus
Me: I'm going to ask you some questions now. What is your name?
Schuyler: (touches screen a few times to get to the preprogrammed greetings page) My name is Schuyler.
Me: And how old are you?
Schuyler: I am five years old.
Me: Now, who am I?
Schuyler: (points at me and smiles) Oo! ("You.") Daddy. (points again) Oo!
Me: Thank you! (places a purple rubber duck on table) What color is this?
Schuyler: (navigates to colors page) Color pink. (hits backspace, corrects herself) Color purple.
Me: All right, very good! (Schuyler picks up duck and makes it hop away as I speak.) Where do you live?
Schuyler: (navigates back to greetings page) I live in Austin.
Me: Are you hungry, Schuyler?
Schuyler: Yeah! (navigates to main page) Eat.
Me: What do you want to eat?
Schuyler: Pizza.
Me: Say the whole thing, please. Show me the whole thing.
Schuyler: I want eat pizza.
Me: Very good! (Schuyler laughs and claps.) Are you thirsty?
Schuyler: Drink water.
Me: You want water? Can you say the whole thing?
Schuyler: I want drink water.
Me: Okay, good, we'll do that in just a minute. Do you have a doggy?
Schuyler: (nodding head) Yeah. (navigates back to preprogrammed greetings page) I have a dog named Lulu.
Me: Schuyler, can you tell me what this is? What does it do?
Schuyler: I use this language communication device to help me speak.
Me: Schuyler? What does a monster say?
Schuyler: (giggles and navigates to main page, hits button twice by mistake) Rire! Rire! (claps happily)
Me: Okay, Schuyler, we're all done, can you say goodbye?
Schuyler: Goodbye. (waves to camera) Aye, ah-ee! Aye, ah-ee! ("Bye, Daddy")

The lights came up and the members of Schuyler's IEP team began murmuring among themselves. Margaret sat quietly, her face unreadable. Tammy looked over at me and smiled.

"So that's what she's doing at home," I said, closing my laptop, on which I'd been showing the brief movie they'd just watched. "I shot this two nights ago. She had the loaner device for two weeks, and she had just been using her own Vantage for two days. You can see that even now, she's able to answer questions using preprogrammed answers, and she's able to find and identify colors. She's using multiple levels to find food menu selections, and she's putting her choices into very simple sentences. And she's enthusiastic about it, she uses it now to answer questions that she's perfectly capable of signing. She's just barely getting started on this."

Tammy nodded. "Mr. Hudson, this is great, I'm so glad you brought this in. I've been reading Margaret's report, and I have to admit, I was concerned."

"We just read that this morning," Julie said. "I don't understand what's different at home from what happens when she's here."

I knew exactly what she was talking about.

Static one-hit voice output devices can be utilized successfully if supported in the specific setting. Preprogramming and setup would be necessary to ensure that Schuyler could have powerful and successful communication when she activates the button. The high tech dynamic devices have not been more successful, nor provided clearer communication than her other communication modes. Due to her need to have more opportunity [sic] learning the system, learning the language, and recognizing the power of a voice output, all modes should be used for communication.

Inconsistent willingness to use the devices has also hindered progress. However, Schuyler has great potential to use a dynamic voice output system in the future. Thus, even though the dynamic voice output is not educationally necessary at this point, she would greatly benefit from early intervention and training on the dynamic voice output systems for her future communication.

"I didn't know what Margaret's report said before I videotaped Schuyler on her device," I said, "but I'm glad I did it now. I'm concerned about this ‘inconsistent willingness' to use the device. If there's a difference between what's happening at home and what's happening here, I'd like to bridge that so she's experiencing roughly the same thing in both places. She's thrilled to use it at home. I'd like her to feel that same excitement when she's here."

The meeting went our way, I'm happy to say. The movie had spoken for itself, and while Margaret was still a bit of a pill for the rest of the meeting, she didn't have any serious objections to embracing the device as part of Schuyler's curriculum. Indeed, she'd already said as much, if grudgingly, at the conclusion of her report.

"There's one last issue to work out," said Tammy. "I know you want Schuyler to attend summer school classes this summer, and that was up in the air. The issue is this: will a child regress beyond what we consider to be typical during the summer, to such an extent that she will fall significantly behind her peers in the fall? The irony for Schuyler is that she has done so well on her device and in her general school work that it would be hard to justify her inclusion in summer school.

"However," she continued, "Michelle has suggested that since Schuyler is so new to her device, we should make a request to the board that she be included in the summer program in order to continue her training. I'll let you know in the next day or two whether that's going to happen."

And just like that, the most productive IEP we'd ever had was over. We shook everyone's hand and accepted congratulations. Before people could leave, I stood up.

"The only other thing I want to mention is that when this report says that Schuyler's device is not ‘educationally necessary,' I hope you all understand that we believe otherwise. It is our position that this is the most promising development yet for her, and we'd like for everyone to be on the same page."

It was a snotty way to end things, and perhaps had a touch of "How do you like her now?" but we had fought so hard to get Schuyler that device, and if I hadn't had a big fancy Web site with generous readers, we would have lost that fight. When we stepped back and looked at the whole story of the Big Box of Words, from the earliest discussions to the moment Schuyler's little fingers touched the screen, one thing was consistently true and was now being proven by her own success.

They were wrong about her, and we were right.

(Schuyler's Monster: A Father's Journey with His Wordless Daughter, St. Martin's Press. Copyright 2008 Robert Rummel Hudson )

Casting of pods

If you liked my last entry but found the whole "left-to-right eyeball tracking" thing to be a distraction, you'll be pleased to know that QN Podcast (The Podcast Formerly Known as Quirky Nomads) featured the entry in their March 9th edition, "Ambush". Thanks, Sage!

You'll be even more happy to know that it's not my yokelly voice this time. It's encouraging how much smarter I sound when someone else is reading.

Ambush my heart

Pondering monsters
Originally uploaded by Citizen Rob

Sometimes it sort of sneaks up on us.

Schuyler came home from school without her speech device today, which as you can imagine is a pretty big deal. We were stern with her, in that way that is probably a necessary part of the parenting process but which makes me a little queasy, and we found ourselves back at her school at seven o'clock at night. A janitor let us in, and Schuyler took us to her mainstream classroom. And there it was, the Big Box of Words, along with her lunchbox and a few other items that should have come home with her.

We led her miserably back to the car, lecturing her sternly the whole way. When we got to the car, we talked to her about the importance of having her device with her at all times, both because of her communication needs and the fact that, yeah, she's a nine year-old kid walking around with a $7500 piece of electronic equipment.

Throughout the questions and the admonishments, Schuyler sat quietly, her face downcast and sad. I can't look at her face when I talk to her in those moments, because I'll fold like a house of cards if I see those eyes.

It occurred to Julie that if Schuyler was leaving her device in her last classroom, she must not be using it in her after school program. That's not incredibly surprising since they mostly play and run around, in a rough and tumble environment that doesn't lend itself to using the BBoW. But in addition to any emergency communication needs, Schuyler also does her homework after school, so she needed to have the device nearby and accessible.

"Do you ever even use your device after school?" Julie asked her.

"No," Schuyler answered sadly.

"No? Why not?"

Schuyler hesitated, then started punching buttons on the device. When she was done, she looked up at us, with an expression of sadness and maybe even defeat, a look I very rarely see in her eyes. Rarely, but occasionally. When I see it, I take notice. She touched the speech button.

"They don't know I can't talk."

Yeah, sometimes it sneaks up on us.

I just started to cry, out of nowhere. Julie held it together a little longer, but not long. "She knows," Julie said. "She really understands, doesn't she?"

There was nothing left to say after that. I gave Schuyler a hug, a long one, and we drove in silence to the Purple Cow, her favorite restaurant.

Later, I asked Schuyler who she was talking about. "Who doesn't know you can't talk?"

She signed "friends".

And so it turns out that a father's heart can break twice in one night.

Mall monster

More video. Here's a peek at how Schuyler communicates in the course of a typical evening. She tells a little about herself, orders her dinner at a restaurant, and takes a slightly queasy spin with the camera.

Monster Slayers by the Bay

Schuyler and the Big Box of Words
Originally uploaded by Citizen Rob

When you're a special needs parent, a Shepherd of the Broken, and you finally find a school that seems to get your kid and is truly working for a greater good, it's so easy to feel like you're living a world apart. It seems fragile, as if the bubble in which you exist is the only one of its kind in the world, and that if it should pop, everything would be entirely and devastatingly lost.

And then you find other bubbles, other pockets where people are building their own similar worlds, and suddenly it feels like everything might just be okay, and that the world might just be getting incrementally better, despite all appearances to the contrary. The broken are being helped to their feet and into the world all over, it turns out, and while the lost still vastly outweigh the found, it's a start. It won't do forever, or even for long, but it'll do for now.

Last week, my friend Monique van den Berg and I were fortunate enough, thanks to the efforts of the Prentke Romich Company and particularly due to the work of PRC's Kara Bidstrup, to visit two programs in the San Francisco Bay Area that are not only doing the same kind of work as Schuyler's AAC program here in Plano, Texas, but have served as models for this program and many others. We met other teachers, ones who have been doing this work with kids, REAL kids in REAL schools, and pretty much for as long as the technology has been in development to do so.

Most of all, I met the kids.

The Bridge School in Hillsborough, California was founded in 1986. The idea was to create a learning environment where kids with complex communication needs could develop and thrive all the way to adulthood, largely through the application of augmentative and alternative communication. The school uses a multi-modal approach, similar to how Schuyler communicates through a combinations of her device, her sign language and her limited verbal skills.

Since the very beginning , the school has been funded at least in part thanks to the annual Bridge School Benefit Concert, thrown every fall by Neil Young and his friends. The lineup over the years has been pretty impressive, including (and I'm not even kidding here) Bruce Springsteen, Billy Idol, Bob Dylan, Jerry Garcia & Bob Weir, Tom Petty & The Heartbreakers, Tracy Chapman, Elvis Costello, Willie Nelson, Elton John, James Taylor, Simon & Garfunkel, Beck, Emmylou Harris, The Pretenders, David Bowie, The Smashing Pumpkins, Alanis Morissette, Dave Matthews Band, R.E.M., Sarah McLachlan, Barenaked Ladies, Eels, Sheryl Crow, Green Day, Lucinda Williams, Robin Williams, Red Hot Chili Peppers, Foo Fighters, Thom Yorke, LeAnn Rimes, Jack Johnson, Wilco, Counting Crows, Paul McCartney, Tony Bennett, John Mellencamp, Los Lobos, Norah Jones, Jerry Lee Lewis, Bright Eyes, Good Charlotte, Trent Reznor, Death Cab for Cutie, Gillian Welch, Devendra Banhart, Tom Waits with Kronos Quartet, John Mayer, Regina Spektor, Cat Power...

So yeah. The concert is a big deal. The bigger deal is what you find inside the school.

We met with the Bridge School's executive director, Dr. Vicki Casella, who was kind enough to take some time to explain the program, and then we were given a tour by Kristen Gray, the school's Outreach Program Manager. The Bridge School keeps a small student population, only fourteen kids at a time, but the program is a transitional one, with the goal of getting these kids back out into their community schools. The school supports about fifty kids outside of its small campus, and the logistics and resources and above all training required to do so must be daunting.

When I met the kids, I was suddenly aware of just how challenging a task this is for the Bridge School. Of the fourteen kids in the program, none were ambulatory and most presented physical challenges that could best be described as extreme. These are the cases that the Bridge School serves exclusively now. And yet every single one of them is learning to communicate, through a variety of creative techniques and strategies, all with the goal of graduating these kids from Bridge and transitioning them to their home school districts or other educational placements.

More similar to Schuyler's AAC classroom was our next destination. The TACLE program at Oakland's Redwood Heights Elementary is a program that was originally established in 1990 by the Bridge School, along with Oakland's Programs for Exceptional Children, California Children Services and Associates of Augmentative Communication and Technology Services. If the Bridge School is an island of specialized learning, then the TACLE program is an outpost, a fortress deep within neurotypical territory. Like Schuyler's class, these kids are integrated into the elementary school where they are housed. The teachers in the class, Stephanie Taymuree and Michele Caputo, were simply extraordinary. I'm not sure how to describe it except that the just GOT these kids. They understood exactly what the kids needed, they knew when to be calm and when to be excited, when to be "appropriate" and when to recognize the importance of a communication moment above all else. I found myself asking them questions about my own parenting approaches, questions I'd been carrying around for me for years without even realizing it.

Their skill and their commitment showed. It was clear in the enthusiasm of their students, many of whom lined up with their PRC Vantage speech devices to tell us the things that were fluttering in their heads like bats searching for a portal, looking to set those thoughts free. They used their devices to speak, sometimes in sentences and sometimes simply in excited, frantic strings of associated words, and despite the fact that many of them never even take their AAC devices home (due to occasionally difficult family lives at home), these kids were incredibly fired up about communicating electronically, to a degree that I'm embarrassed to say that I've not seen in Schuyler, perhaps ever.

By the end of the day, it had become clear to me that the teachers and therapists at Bridge and at the TACLE program are achieving their goals with persistence and patience and an overwhelming positivity. As I was introduced to these students, what I noticed most of all was the thing I always look for when I meet kids with disabilities. Regardless of their often extreme impairment or their difficult home situations, these kids are bright-eyed and forward leaning, excited about their surroundings and eager to break through or go around the walls that they've so often in the past found looming in their way.

If you've had any experience with good special education programs, you probably understand what I mean, just as any past exposure to a BAD program will have familiarized you with the dull-eyed, lethargic kids that populate those programs where teachers and therapists have, on some fundamental level, given up on their students and lost their faith. It's a kind of difference in a child's eyes and in their expressions; you see it in kids who are powerfully motivated and inspired rather than placated and underestimated and ultimately abandoned by their schools.

It's hard to describe, but I saw it in the eyes of the very first girl I met at Bridge. I guess the best way I can put it is that when I looked into her face and into those flashing eyes, behind the impairment and the physical manifestations of her own particular monster, I could see, with a sad and yet wonderful clarity, the little girl she was meant to be. You look into their eyes and you see them as they should have been, and as who they can be still in their own way. It's sad and it's wonderful, and I think perhaps most of all it's the thing that keeps these remarkable teachers and therapists coming back to work every day.

I understand how lucky we are. I know how fortunate Schuyler is, to be ambulatory and relatively unmarked by her monster in any significant physical way. She's nine years old now, and she's been in an excellent program for three and a half years. Schuyler finds a way to communicate now, and she may be delayed developmentally but it no longer feels like she's doomed to remain that way forever. Schuyler grows more "normal", for lack of a better word, every day, and one day she just might reach the point where she can walk, and more importantly TALK, in the neurotypical world like just about any other young woman you might meet. In some ways, she already does.

But after spending time with these kids and watching how hard they work with AAC technology to reach the world around them and communicate the things going on inside their beautiful and remarkable brains, I am reminded once again of a simple truth, one that I sometimes forget, to my shame.

Without the support of so many people and without the hard work of everyone who loves her and refuses to give up or accept things that no parent should ever accept, and most of all without her Big Box of Words and her little mental toolbox of sign language and her broken but earnest verbal expression, Schuyler Noelle would still be that ethereal, otherworldly little girl, the one I described in my book. So strange and beautiful, but not entirely ours or entirely in our world.

Letter to PRC

things that are green
Originally uploaded by mo pie

I'm writing more about my visit to the Bay Area (much more, in fact), but I wanted to share a letter I just sent to the president and to the marketing director of the Prentke Romich Company, known to monster fighters all as the makers of Schuyler's Big Box of Words.

Sometimes I feel like so much focus falls on people when they don't measure up to expectations, and yet there are so many people out there getting it right. I don't ever want to forget to say thanks when they do.

---

Hello again!

I just wanted to take a moment and let you know that I had a very successful visit to the San Francisco area this past week, visiting the Bridge School and the TACLE Program at Redwood Heights Elementary School in Oakland. It was amazing to see how these programs work, and to meet the dedicated people who are fighting the good fight. It's one thing to talk about how augmentative communication technology SHOULD be implemented in a school environment, but quite another to see how people are making it a reality. It has given me a lot to think about, and to write about as well.

I would be remiss if I didn't let you know just how extraordinary Kara Bidstrup was in making my trip such a memorable experience. From the very beginning, she was enthusiastic and very efficient in setting up these visits and getting me where I needed to be without any trouble at all. She was very warm and friendly, and was a real pleasure to be around. It was clear that the people we met at both schools held Kara in high regard, and I can't imagine that she could have represented PRC with any higher degree of professionalism and enthusiasm.

Beyond her role in facilitating my school visits, Kara was a real joy to talk to one-on-one. I was especially thrilled when she came to my book signing the next night at Book Passage in Corte Madera. Schuyler and Julie were unable to come on this trip with me, but they appeared at the event via teleconferencing. When Schuyler used her Vantage on the screen and audience members began asking questions, Kara stepped up and was able to show a Vantage Lite and demonstrate how it functioned. I received a number of very appreciative comments from people who had been curious about the device when they read about it in the book and loved being able to see one in person, as well as having a knowledgeable person on-hand to answer questions about it. It made me realize that I should have invited a PRC rep to be on-hand at my solo events all along.

The longer I work with your company, both in my capacity as a writer and advocate and more importantly as Schuyler's father, the more impressed I am with the level of competence and enthusiasm of everyone who works for you. It speaks volumes about PRC that I was thrilled at how amazing Kara was, but not one bit surprised. Thank you once again for everything you've done, both for me and my family and for all the other people out there who seek so desperately for a voice and find one, thanks to you.

My continued best wishes,

Rob R-H

Muted anxiety

Recently, I've been reading a great deal of literature and material on the subject of special needs parenting (including an absolutely amazing manuscript I may be blurbing that I can't WAIT to tell you about in the coming months as it gets closer to publication), and the thing that strikes me once again is the incredible diversity of the experiences we have.

In the past, I've addressed how those of us writing about our experiences as "Shepherds of the Broken" do so with a variety of perspectives and approaches to what our kids face. Some of us are pragmatists, some infuse our writing with spirituality or religion, some of us use humor, some report from a place of despair, and others write with cheerful optimism. One of the reasons I have largely rejected the idea of People First Language is that it only really works as intended when it's applied as a universal standard, which assumes that there is a common attitude and approach to special needs parenting. In my experience, nothing could be further from the truth.

Lately I've been especially aware of how the experiences we face as special needs parents are so wildly divergent as to seriously challenge the notion that we really even have a comparable perspective at all. We do, of course; the challenges we face in receiving services, the grief over the loss of the imaginary child bourn from our expectations who is not to be, the fight that we take on because if not us, then who? -- these really do seem to be universal experiences. But our kids all have individual monsters, with wildly different effects on their hosts. The variety of disabilities can be daunting when take a step back and take it all in. God, the Universe, Fate, whatever you believe in -- someone or something seems to have a limitless (and limitlessly cruel) imagination when it comes to ways to break children.

Among children with disabilities, Schuyler is luckier than most, we are aware of this. When people meet Schuyler, they tend to take her at face value; her monster is hidden, for the most part, and doesn't obviously stamp itself on her outward appearance. Her facial structure is "normal" (whatever that means), her social behavior is largely consistent with that of a neurotypical kid her age, and she is completely ambulatory, albeit somewhat clumsy. Truthfully, however, Schuyler tends to skew a little younger when she finds random play friends; her delay and her lack of language still makes her a more ideal playmate for kids who are a few years younger than she is. There are concepts that she simply doesn't get, concepts that a nine year-old should understand. It's nice to pretend that she's on track with other kids her age just because she's attending age-appropriate mainstream classes part of the day, but the truth is more complicated than that, and it's going to become more and more of an issue as she gets older. Will she ever catch up to her peers? Nobody knows, but she's not there yet, not by a long shot.

Still, it's easy to put her monster out of mind. This might be a strange confession from someone whose very identity as a writer and public speaker is largely defined by special needs parenting, but I don't think of Schuyler as a child with a disability, not most of the time. It's not that I forget, exactly. Rather, the accommodations and adjustments that we make as her parents when we communicate or interact with her on a daily basis have become ingrained in our natural behaviors. It's simply how it is with Schuyler.

When your child says something to you, do you automatically repeat it back to her to make sure she said what you think you heard? Do you keep an expensive electronic device within arm's reach at all times for the times that sign language and Martian fail to communicate a concept? We do, and the odd thing is, we do so without thinking about it most of the time. We've accepted the weird as our new normal, and honestly, your normal strikes us a a little weird. Normal conversation with a child? What kind of futuristic, science fiction concept is that? Do you have a talking cat, too? That's just crazy talk, man.

There are times when it all breaks down, though. Schuyler is a willful child, and while her school is, in most respects, the very best place in the world for her, she's still a square peg sometimes. This has very little to do with her monster and almost everything to do with her father, I know. Schuyler has a natural distrust for authority and a taste for random acts of meaningless defiance, personality traits that are nothing like Julie and everything like me. Notes come home from school reporting various acts of mild insurrection about once a week or so. "Schuyler refused to use a pencil today" was the most recent, and when asked why, she simply stated that she wanted to use a pen, as if the issue was obvious. She clearly understands the idea of her teachers as authority figures. I just don't believe she accepts it, not entirely.

I recognize this as a strength as well as a liability; it's a trait that is going to serve her well when she's older. But it presents a challenge and requires a delicate balance. The issue becomes more complicated when she disobeys Julie and me, of course. Schuyler defies us, because she's nine and because she's Schuyler, and we push back, because we'd like to avoid raising a feral anarchist if we can.

But when she gets in trouble, Schuyler shuts down. She freezes up when we insist that she use her device to explain herself; it's suddenly as if she has never used it before in her life. I mean it, too; she actually used it more proficiently back when she really had never used it before in her life. The problem goes beyond stubbornness, too. She seems to legitimately be unable to calm herself to the point that she can construct a dialogue. Instead, she tries to defend herself verbally, but the more upset she gets, she more unintelligible she becomes. Her words, already identifiable mostly through context and inflection alone, run together into an fretful, angry stream of sound. Her meaning disappears, replaced by an incomprehensible anxiety.

These are the worst moments for us, and while they don't compare to the worst moments some families face, they nevertheless involve a near-complete shutdown of communication. In those moments, our frustration and being unable to simply parent our child is exceeded only by Schuyler's frustration at suddenly finding herself under a baffling glass dome, shouting into a void. In those moments, we all feel broken.

I don't know what the answer is. It saps our strength, all of us, because it shines a hard light on one of the lingering deficiencies of Schuyler's use of the Big Box of Words. It illustrates just how far we all have to go, and how hard we have to work, in order to make this unnatural form of communication feel like second nature to her.

Most of the time, Schuyler doesn't seem broken, not to those of us who love her and live every minute in her world. Even now, though, after all these years and as far as we've come with her, it is painful and shocking when the monster bites.

The Legion of Monster Slayers

Schuyler
Originally uploaded by Citizen Rob

The last time Schuyler visited Chicago, almost four years ago, we were taking her to see Dr. William Dobyns, the geneticist at the University of Chicago who had originally diagnosed her polymicrogyria. We went to see him in the hopes of getting some answers, and maybe a few possibilities, but what we got instead were some necessary but hard truths. We arrived in Chicago in January of 2005 in desperation, and we left in heartbreak.

Last week, Schuyler returned to Chicago in triumph.

The three of us travelled to Chicago for the American Speech Language Hearing Association's 2008 conference, as the special guests of the Prentke Romich Company, makers of Schuyler's Big Box of Words. PRC has been amazing to Schuyler, they've opened up her world in ways that we can only now begin to appreciate. It's not just Schuyler, but thousands of kids and adults who suddenly have a voice, thanks to this company and its commitment to a philosophy of giving users not just words, but language. When I wrote Schuyler's Monster, one of the things I had the opportunity to do was to stand up for all those broken kids who suddenly found voices and thank the people who made it possible.

Last week, we got to meet the people behind the Box. Schuyler got to meet the makers of her gentle miracle.

It's easy to be impressed by the enormity of the ASHA conference. I was told that thirty thousand people were in attendence. This is the exhibitors' hall, which you can see is huge and filled with booths, each representing a separate vision for helping someone. It really is impressive on a large scale. This is the Village made real.

But something happens when you actually get down onto that floor and start looking at the products being promoted. That's when ASHA becomes truly impressive, when you start to see the innovations that exist entirely to help people in need, mostly children, and when you meet the people behind those innovations.

I had the extreme honor of meeting Bruce Baker, who developed Semantic Compaction (or Minspeak) back in the 1980s. Minspeak is currently used by around 80,000 people worldwide. Its principles inform a number of communication techniques, including Unity, the language that drives Schuyler's Big Box of Words. In meeting Bruce, Schuyler was able to shake hands with the man who is literally responsible for giving her words. The fact that he reacted to Schuyler as if meeting her was a singular honor of his own speaks to the character and commitment of this man. I found a quote by Bruce just now that says it all.

"The most rewarding aspect of my work is getting to know people with complex disabilities who, though unable to talk, want to participate in life to its fullest." Bruce has given companies like Prentke Romich the tools to do just that.

With Richard Ellenson

In a speech I gave over the summer, I talked about how those of us who are parents of broken children have been ambushed by their monsters. We've become warriors for our kids because we were chosen to do so, by Chance or Fate or the bully God, and we need the doctors and the teachers and the speech-language pathologists who have chosen to properly arm themselves and go into battle with those monsters. Plenty of people can attest to the fact that I was perfectly happy being a selfish ass before Schuyler was born. I've always been humbled by the thought of those people who saw a need in society and stepped up to do something about it. I didn't choose this life; they did.

But it's not so simple. The truth is that most of these people, many of whom have become heroes of mine, have come to the battle with their own casualties and their own life lessons. They were chosen, too, and in being chosen, they've changed the world.

One gentleman whom I have wanted to meet for a long time showed up at the PRC booth late in the afternoon. Blink Twice CEO and President Richard Ellenson was a successful ad executive whose son Thomas was left with severe verbal limitations due to cerebral palsy. When traditional augmentative speech devices didn't work for his son, Richard stepped up and developed one that did, focusing on ways to communicate quickly and effectively.

The result was the Tango, and I've been extremely impressed with the work Richard has done. Despite her enthusiasm for the Tango when she got a chance to play with it, Schuyler's needs aren't really appropriate for this device; she's thriving on the language-building capabilities of the PRC Vantage. But I recognize very clearly that there are design and philosophical aspects of the Tango that are revolutionary, although like most great ideas that change the world, they seems obvious once you see them.

The Tango doesn't look or feel like an assistive device for a child with a disability. It uses natural-sounding language (and some very high tech magic to turn adult voices into children's) and kid-friendly graphics. More importantly, in a world where Schuyler and her friends are familiar with iPods and game controllers and the Wii, the Tango melds smoothly into their lives, not as a medical device but as part of their digital world. From a design standpoint, the Tango is just one more crucial and cool device for these plugged-in kids to recharge at the end of the day.

I talked to Richard about what I thought was the brilliance of the Tango. "If you walk around this hall, you'll see a lot of impressive and wonderful innovation," he said. "But all this technology says the same thing when you walk in a room with it. It says, 'I have a disability.'"

I love Richard because he brought his specific talents as an advertising innovator to bear on the problem that his son presented, and in doing so he made a difference. Everywhere I turned, I met people doing the same thing, for the same reasons. They were taking their life skills and unique talents and they were turning them into weapons against the monsters.

Including me, I guess, in my own small way.

When your life finds a sense of mission, it's humbling, and it's energizing. Mostly, though, it just makes you roll up your sleeves and get busy.

With PRC's Sarah Wilds

Easily, the most gratifying part of the experience for us was the chance to meet and work with the amazing people at Prentke Romich. For the past three and a half years, Schuyler's life has been changed and her horizons exploded by a device called the Vantage Plus. It's her Big Box of Words, and PRC makes it. When a company has such an astonishing impact on the life of someone you love, it can be a surprise to discover the humanity behind that company.

Prentke Romich has been very enthusiastic about promoting Schuyler's story, and while I recognize the benefit that they derive from her story and the exposure that the book has given to their cause, the fact remains that it is a cause, and one to which that we are thrilled to be able to contribute. When we met and got to know the people of the company, it became clear that the work that they do is their mission, and the passion that goes into that work is fired by stories like Schuyler's, stories that show how much of a difference they are making in the world. When they met Schuyler, their pride in her accomplishments was palpable. I know just how they felt.

Our gratitude goes out to our new friends Bob Nemens and Cherie Weaver from PRC's marketing department, and the rest of the PRC crew in Chicago, all of whom Schuyler fell in love with, as she tends to do with people of quality. Thanks to Trudi Blair, Judith Meyer, Angie Neveadomi, Sarah Wilds, Margaret Perkins (sorry once again for appropriating your name in my book) and Julie Packer for everything you did for us. Sarah and Julie P. in particular were subject to Schuyler's "I'm upgrading from my smelly old parents" affections. How sad for her that at the end of the day, Schuyler is always stuck with Julie and me.

Finally, I want to say what a pleasure it was to meet David Moffatt, President of PRC. That's a daunting thought, meeting the president of the company, but Schuyler saw right through to his big heart, and decided he was her new best friend in a hurry. David was incredibly generous for bringing us to Chicago, and was a gracious host to us while we were there. Meeting him and watching him with Schuyler, it became clear why he does what he does. Well, that's true of everyone at PRC.



Bob put together this little video to send to PRC people. I think the thing to notice is that while I'm being a big Chatty Cathy doll, Schuyler is serious and focused. She signs books like a professional, and is polite and cool. She appears to be taking care of business.

This was an interesting trip because while I was in familiar territory, it gave Schuyler and Julie the opportunity to take on very public roles. Schuyler was a champion, signing every single book that I signed (over a hundred in about two hours, I believe) and charming everyone she met. She spent a lot of time exploring different PRC devices, particularly the ECO-14 and the Vantage Lite, and seemed to take her role very seriously. She had all day Saturday to run around Chicago, gawking at the Bean and stalking dinosaurs at the Field Museum, but Friday was all business. When people ask how Schuyler is dealing with all this book business, I can tell them that she takes it seriously, and she is proud of the work we've done. The work we've done, and that we continue to do.

The conference was a new experience for Julie. From the very beginning, she has chosen to keep a low profile, both in my online writing and, to a lesser degree, in the book itself. I'm not sure I have the talent or the ability to tell Julie's story, which is very different from mine, so I've certainly been okay with her decision to lay low. But the thing that seems to escape some people (including the charmer at the conference who asked her how it felt to be "eclipsed") is that Julie is an incredible mother to Schuyler, and is every bit as involved in the decisions towards her care as I am. We play good cop/bad cop a lot, but we tend to trade roles and keep everyone guessing.

Julie's fantastic in whatever role she takes on. While I present a very public face and build an extremely visible platform from which to advocate for Schuyler and her broken brethren, Julie quietly but brilliantly does her work. Her work is God's work, really, regardless of whether or not he actually bothers to do it himself. In Schuyler's life, God is like a crazy uncle who might show up at Thanksgiving drunk and belligerent, or not at all. For Schuyler, God is optional. She has Julie, and that's enough.

At ASHA, Julie suddenly found herself presenting a public face, one that she'd really never been asked to show before now. I'm proud to say that she stepped up and was brilliant. She was articulate and informed, and she expressed the hardships and the victories of her life as Schuyler's mother with eloquence and clarity. I've never been prouder of her, or of Schuyler.

Team Rummel-Hudson was on last week. We get it right sometimes.

The design innovations I was talking about earlier in regards to Richard Ellenson are also reflected in PRC's newest generation of devices. Putting Schuyler in front of these machines was perhaps the most personally gratifying part of the trip. She has reached the point where she dives into the technology behind these devices without hesitation, and more importantly, she intuitively gets how to use them.

We came to an important decision at ASHA, after watching Schuyler explore two different and amazing devices. After exploring some funding possibilities that didn't exist four years ago, Julie and I have decided to attempt to move Schuyler up to the next generation of PRC device, in this case the Vantage Lite. In a lot of ways, it's not terribly different from her current device, but it has some new features and a new design that makes it easier to integrate into her daily life. PRC has paid attention to what its users need, particularly their younger ones, and it has created a device that looks and feels less like a speech prosthesis and more like a digital enhancement to her world.

And it comes in pink. Lord help us all...

Speechificationalismness

Okay, I put my keynote address to the Assistive Technology Cluster Conference online.

Please keep in mind that it was delivered to a gathering of special education teachers, speech pathologists, occupational and physical therapists, school administrators and some parents of kids using assistive technology. It was also written with the (probably safe) assumption that most of them had never read the book or this blog, so there's material that may obviously seem familiar to you.

Oh, and also, I had a time slot of over an hour, so if it seems long to you as a reader, imagine how I felt. That's a lot of jabbering for one old man.

Monster Slayers' Ball

Big Head Schuyler (and her Monster)
Originally uploaded by Citizen Rob

Do you want to know a moment when this whole fancy pants book thing felt a little extra real recently? When I made a joke and about five hundred people laughed.

I gave the keynote address at the 2008 Assistive Technology Cluster Conference in Richardson, Texas last week. This is something that has been in the works for a while, and I was excited about it, in a "they want me to speak for how long?" sort of way. Excited, with a "good thing a wore my brown pants" element of terror mixed in.

I don't want to sound like I am tooting my own horn here, but honestly, I think it went really well. They laughed at my jokes (Looking for an easy laugh when talking to special educators? Make fun of No Child Left Behind...), almost no one left while I was talking, no one booed or threw anything at me, and when it was over, some of the people who came up to talk to me had been crying. There's nothing like seeing someone's runny mascara to make you feel like you got it right as a writer. I was more concerned about my delivery than the actual text, but I got through it without stammering too much or dropping any random F-bombs, so all in all, I'm pleased with how it went. Perhaps I'll put it online.

(Edited to add: Done.)

As is usual with this book and the appearances we've made, however, the real star was Schuyler. I put together a PowerPoint presentation (actually, on Apple's very cool Keynote software; imagine Powerpoint's hotter, sluttier sister) that was heavy on the Schuyler images, and that was a wise, if not particularly unexpected, move on my part. When I mentioned Schuyler's ability to communicate her defiance without words, the image on the three big screens got what was probably the best reaction of the whole speech. As hard as I work to represent her in my writing and in my advocacy, Schuyler speaks for herself best of all.

When my speech was over, the organizer of the conference invited Schuyler to come up to the front. In this huge room full of adults, Schuyler looked tiny and fragile to me, but she strode to the front without hesitation in her little black dress and newly-reddened hair, took the microphone and said, with confidence and almost comprehensibly, "Hi everyone!"

And THAT, my friends, was the best part of my keynote address.

The conference itself was fantastic, and very eye-opening for us. They gave us a table in the too-small exhibitors' hall, where we signed books and met teachers and parents and, most importantly, other people who were using assistive technology like Schuyler's Big Box of Words. These were young people with disabilities much more severe than Schuyler's, to the point that they had to struggle many times just to put their words in order. And yet, I don't think I can adequately describe how powerfully affecting it was to watch them navigate on their devices and communicate in full sentences, with complexity and nuance and humor. It gave me, and Schuyler most of all, a lot to consider where her own device usage is concerned.

One of the most fascinating parts of the conference for us was seeing exactly how much work is being done by some very smart people to advance the technology that kids like Schuyler are using. Prentke Romich, makers of the Big Box of Words, were well-represented, as usual. I'm always amazed at the people who work for that company, not just by how smart and committed they are to their work, but also just by the humor and confidence they exude. Two of their reps were device users themselves, and they were kind enough to come talk to Schuyler from time to time on their devices. You can probably imagine how weepy I became, on more than one occasion.

There were other companies represented, and a lot of very innovative technology on display. I came away with a lot of ideas and thoughts, some of which I'm going to share with PRC soon. The whole thing made me think about this in whole new ways.

But most of all, the thing I took away from this conference was an appreciation for the work that all these people are doing. Teachers, therapists, administrators, parents, advocates, all of them. When I looked out at that audience, the thing I felt most of all was humbled (and how often does THAT happen?). I was standing in front of the people who have made it their life's work to help kids like Schuyler.

Early in my speech, I said:

It might be the most striking difference between our experience with the world of broken children and yours. As special educators and experts in assistive technology, you have sought out the monsters. You’ve armed yourselves with the knowledge and the tools to fight them, and you’ve gone into battle with your armor in place. For parents, the monsters have found us, in most cases sitting by the campfire in ignorant bliss, totally unprepared.

There’s a transition that special needs parents go through, and it’s one that I suspect never completes itself entirely. We go from seeing sad stories about kids with disabilities on television and saying "I can’t even begin to imagine how those parents deal with that" to becoming the parents who face it with our kids and for our kids. We learn quickly to conceal our fear, which is very great, and our self-doubts, which are many. We take hold of whatever we need in order to find that extra strength, whether it’s God or friends and family or a good stiff drink, and we draw our rubber swords. When we get to the battlefield, we find… you. You’re already there, our generals and our scouts, and you know the lay of the land. We’re not ready when we get there, not quite, but we will be soon enough. Once we get past our denial and our mourning for the child we always thought we’d have, we devote ourselves to the complicated, broken but equally wonderful child in its place. No one in the world is a quicker study than the special needs parent.

I've learned so much over the past few years, most of it about myself and my own capabilities, and all of it from Schuyler. Being there in front of those amazing people and being able to share my perspective with them was one of the singular honors of my life. And that's the truth.

Big Box of Inappropriate

Schuyler and the Big Box of Words
Originally uploaded by Citizen Rob

Has it really been almost two weeks? I apologize for the silence. I've been working on a lot of things and it's kept me busy. "What are you writing these days?" I get asked a lot. Well, I have not one, not two but three speeches to write this summer, including a keynote address for this conference on technology in special education in which I have an hour and a half allocated for whatever I plan to say. An hour and a half. I predict lots of Powerpoint and perhaps a puppet show.

Summer with Schuyler continues to be sort of hit and miss, to be honest, although it's still a vast improvement over previous summers when she was being watched by snotty know-it-all college student interns working for the school district. (I still remember the 19 year-old tool who, when told that Schuyler needed to be encouraged to use her device, disagreed and backed up his position with "I am a psychology major...")

As much as she must love hanging out in the office with her forty year-old father, she's missing her school friends and it's beginning to show. We keep trying to arrange play dates with some of her AAC classmates, but everyone's busy during the summer (what is this word "vacation" of which you speak?) so it's hard to put together. She's got her cousins and a few neurotypical kids that she sees now and then, but I think that as much fun as she has, it still serves as a reminder of her brokenness, and as an eight year-old, she's not as in love with being different as she might have been once.

We've been trying to learn a new word in sign language every day, and she's shown some excitement for that. I think part of her enthusiasm has come from the fact that I've been letting her choose the words, which has led to such useful words for everyday use as "robot" and "bat" (on the day The Dark Knight opened, and no, I didn't take her to see it). Now that she's beginning to enjoy learning new words, we may start trying to sneak some useful ones in from time to time. Not that "robot" isn't a solid daily vocabulary tool.

The Big Box of Words remains her primary form of communication, however, or at least our main focus. One way of firing up her enthusiasm for it has been to add things to it that she and I say when we're teasing each other, which is, well, pretty often. We already added a little rhyme from my childhood that I taught her a while back to say when people eyeball her in public, so her device will now say "Stare stare, booger bear. Take a picture, I don't care." (When she's old enough, perhaps she'll replace it with "What are you looking at, assmonkey?") At lunch yesterday (at a Mexican restaurant, naturally), she asked me to add "Beans, beans, the magical fruit. The more you eat, the more you toot." Clearly, I am a fine, fine influence on my child. Her teachers are going to be so proud.

Speaking of which, last week Schuyler wanted to use her device to call me a "monkey fart" (honestly, I don't know why Julie teaches her these horrible things), and lo and behold, the Big Box of Words did not have the word "fart" programmed into it. You can probably see where this is going.

Twenty minutes later, Schuyler had a new subdirectory on the BBoW listing words associated with, well, bodily functions. Say what you will about the beauty of language and creating an appropriate and enriching environment for a child, but come on. An eight year old who can't say "fart" or "burp" or "booger" is not a complete human.

And honestly, just assigning icons to her new words made it all worthwhile.

Did I mention that I'm the keynote speaker at a professional educators' conference? I did.

No Blue Fairy

Schuyler
Originally uploaded by Citizen Rob

The Big Box of Words has been such a positive thing for Schuyler and her future that I think I usually fail to give a completely balanced picture of the ups and downs that accompany her experience with assistive technology.

Of late, she's had something of a rough time with the BBoW. There are times, especially during the school year, when Schuyler really seems to dig the device and the very unique place she has in the world because of it. Lately, though, I think it's just pissing her off.

Part of the issue is summer. No school, no peer group of device users, and no structured classroom environment. Just her smelly old parents and lots of activities that are not even remotely BBoW-friendly. She loves to swim, for example; she has never willingly left the pool without at least a grumble or a plea for five more minutes. She'd stay in her swim suit all summer if she could, her device hidden safely away on dry land. For the Fourth of July, we went camping with my brother's family, and I can count the times I saw her use the device on one finger. I know because I made her do it, and while it wasn't exactly under protest, she definitely did the bare minimum required.

We've decided to try to vary her techniques a little, stepping back up to the sign language plate again, for example, as a parallel technique alongside the device. Schuyler's condition limits her fine motor abilities in her hands and thus keeps her from being truly skilled at signing, but that never kept her from having real enthusiasm for it. She learned most of her signs from the early Signing Time videos, which I think I've discussed before, and now that they're on PBS, the DVR catches new episodes every now and then and we all sit down and learn them together. Her signing is limited by her own monster-stifled, clumsy fingers and by the limited number of people who can understand her. Nevertheless, signing still presents an elegant way to speak that the Big Box of Words simply can't match, at least at this point where she's still constructing sentences and thoughts at a necessarily slower, sometimes maddening pace. She understands the necessity of the device, but I think she sees the beauty of sign language in a way that I am only now appreciating myself.

Recently, Schuyler has begun to outwardly express her own awareness of her monster. She has this thing she does now to explain it, a whole story told in gestures and sign language. She gently touches her throat and shakes her head. She then touches her head with her finger (the sign for "think") and draws a line down to her mouth, signifying how the things she wants to say don't make the trip from her brain to her mouth. I like how she recognizes that her voice is broken, but her mind is working. It's important for her to know that her thoughts are there, and they are magnificent.

The thing about this little mimed explanation of Schuyler's condition, however, is that no one taught it to her. It's all hers. While some people worry about how to tell her what's wrong with her and how to explain it in gentle terms that won't bruise her delicate psyche ("Don't call her broken!"), Schuyler has figured out her own harsh reality by herself and expresses it without a hint of self-pity or trauma. Schuyler knows her monster better than any of us; it's presumptuous for anyone else, even me, to pretend we understand it, too, or to think that we can somehow tell her something about it that she doesn't already know on some visceral level.

Lately, Schuyler has balked a few times in public at using the Big Box of Words to answer other people's questions, and the sense that I get from her is that she may be starting to feel, if not embarrassed, at least self-conscious about it. Schuyler may delight in being a weird little girl, but only when it is on her terms. A speech output device still represents her very best (and possibly only) chance of being able to spontaneously communicate any kind of real expressive thought, but it remains an unnatural way for a little girl to speak. I suspect the day is coming, and soon, when her desire to be "normal" is going to cause some serious heartbreak for her.

There's one literary figure with whom I have always associated Schuyler, although to even say it aloud breaks my oft-broken old father's heart right in two.

In her own very unique way, Schuyler is Pinocchio.