Showing posts with label big box of words. Show all posts
Showing posts with label big box of words. Show all posts

June 9, 2015

Schuyler will now take your questions.

As I have mentioned before, I will be presenting the keynote address on August 3 at the Region 10 Service Center in Richardson, Texas. Here's the information:
Title: Ten Years of the Big Box of Words

Presenter: Robert Rummel-Hudson, Author
Schuyler Rummel-Hudson, Student/AAC user 
Ten years since his daughter’s first encounter with Augmentative and Alternative Communication, Robert Rummel-Hudson (author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, St. Martin’s Press 2008) reflects on his family’s experience and his observations on the present and future of assistive technology and disability advocacy. He will be joined by Schuyler, who will share her own perspective on her life with her Big Box of Words.

The most interesting thing about that abstract is the fact that Schuyler will be joining me, as a co-presenter. As we start putting our presentation together, she's trying to organize her thoughts. After talking about it, we'd decided that rather than just sitting down and trying to write something off the top of her head, Schuyler would rather answer specific questions and integrate that into her presentation. And she would like to get those questions from the many people out in the world who have followed her story for so long.

So if you have a question that you think would help Schuyler present her story, you can ask it in the comments here, on my Facebook page or via email at We talked about what kinds of questions she'd be asked, and came up with some categories that she's comfortable with.

1) Her use of assistive technology over the past ten years.

2) Her experiences in school.

3) Her experience with polymicrogyria, her "little monster".

4) Her future, both school and her adult life.

5) (And this is a big one, I think.) The parts of her life and her world that have nothing to do with her polymicrogyria. The Monster-Free Zone.

We both thank you in advance. After our presentation on August 3rd, I'll reformat her answers and post them here for everyone.

May 4, 2015

Between Friends

Today at Support for Special Needs:
Every now and then, Schuyler has the chance to connect with another AAC user. It doesn't happen as frequently as it once did, and certainly not as often as she would like. She doesn't have many classmates using AAC devices at school now; I think she might actually be the only one in her particular classes. She no longer has her tribe, which I suppose is as expected. She was always going to be an outlier. But when she finds herself with another user, she falls into a comfort zone that I can't even begin to understand in a meaningful way.

February 23, 2015

Dirty Bird

Today at Support for Special Needs:
I won't pretend that helping Schuyler program her device to sound like a George Carlin routine wasn't fun. But as I have been so many times of late, I was proud of Schuyler for taking another step in her journey towards independence and self-actualization. She understands, like any kid her age should, that saying those words in the wrong circumstances will result in a quick path to repercussions. The trick for her is going to be discovering the boundaries that she can push. If Schuyler is to truly own her prosthetic language as being truly her own, it's got to be without restriction. Helping her to take agency over her language possibilities doesn't make me a good father, any more than helping to give her the tools to drop an F bomb in class makes me a bad one.

February 16, 2015

The Technological Why

Today at Support for Special Needs:
I have a confession to make, one that on the surface would seem a little awkward, given the public position I've taken on the subject. Sometimes I'm baffled by technology. There, I said it. I mean, I'm not at that "old man standing on the porch in shorts and black socks, shaking my fists at the newfangled world" level of befuddlement. In fact, I don't feel threatened by technology at all, which I suppose is something. By and large, I live a life driven by technology to a certain extent, so I'm getting by okay. But there are embarrassing gaps. I never establish Bluetooth connections on the first try, for example. And I'm glad the Age of the Fax is over, because I was almost entirely incapable of sending one successfully. That was a rough few years.

December 29, 2014

Theories of Everything

This week at Support for Special Needs:
The film by and large gives a respectful and accurate look at how technology can make a real difference in the lives of people with disabilities. Speech tech gave Stephen Hawking the ability to communicate his powerful vision of time and space and the origins of our universe, and in doing so made the world a far richer and better place. Not just for one man or his family, but for the entirety of human civilization. That's not too bad.
Happy New Year to everyone who takes the time to read my stuff. Here's to the future!

December 8, 2014

A Scene, and a Revelation

Today at Support for Special Needs:
Schuyler's percussion teacher doesn't sign, but rather reads lips. That's not much help with Schuyler, whose lips aren't doing a lot of heavy lifting when she speaks. And so a big part of what Schuyler is likely to get from her private percussion lessons has little to do with drumming and everything to do with communication and information exchange.

November 3, 2014

Making Our Own Ice

I want to discuss something very specific to augmentative alternative communication, so my apologies in advance if this isn't part of your world. I specifically want to address the strange, illogical divide in the professional speech technology world between those who use dedicated speech devices and those who find success with consumer electronics products like Apple's iPad. I'm still surprised to watch these conversations unfold online and see how blithely parent advocates and end users are often condescended to. Frankly, it pisses me off, which is why I'm subjecting you to this post.

Some of the discord comes from representatives of the big speech device makers, companies who are responsible for developing the technologies that AAC users have come to depend on but who have been struggling to sustain their business models now that commercial tablets have democratized the AAC process. It's a huge shift, and one that the industry is still trying to figure out. For a specific subset of ambulatory users, suddenly the potential purchase price for a speech language system has dropped from something in the area of eight thousand dollars (plus service agreements that can run around a thousand dollars a year) to under a grand, depending on the communications app and however many whistles and bells you choose for your tablet. So potentially MUCH under a grand.

This change has meant that where once insurance companies and school administrators held final say in the systems purchased, for some that power has now shifted. Parents and end users themselves are suddenly able to make decisions about the technology that allows them to communicate. This democratization comes with pitfalls. It is up to these parents and users to get good information about the language software that is available, and to find resources to determine what AAC needs they or their kids may have. They don't always have the support personnel in place to assist them in making good decisions. There are a lot of very, very bad AAC apps out there, and clearly someone is buying them.

The problem with the dialogue that is taking place in sectors of the AAC community is that it makes some dubious assumptions. Cheaper is inferior. Using commercial tablets amounts to a "one size fits all" approach. More expensive systems mean more solid support. You get what you pay for. And teachers, parents and end users are simply not qualified to make those choices.

Getting good support for systems running on consumer electronics is a real concern. But honestly, it's no different from the situation faced by many schools and families out there with dedicated devices without any meaningful local support. It's an industry-wide problem, and honestly one that can be exacerbated for users of expensive dedicated devices by the prohibitive cost of maintaining service agreements from year to year, as well as issues like loaner devices for repair downtime.

iPads and other consumer tablets aren't a fit for every user or even most users, and I'm not sure I've ever heard anyone make the case that they are. But for users like Schuyler and thousands more like her, these tablets provide possibilities that go beyond a speech prosthesis. To say that we are in one "camp" or another, and that AAC users are divided between dedicated devices and consumer electronics, is a gross oversimplification, and it's not accurate. Schuyler uses an iPad, and it runs the same language software that she used on her dedicated device, back when it was the appropriate choice for her. She not in a camp; she's a hybrid, and I suspect she's the rule, not the exception.

In a piece she wrote for BridgingApps a few months ago, Schuyler had this to say about using her iPad:
I like to use my iPad Mini because it help me with talking and I can looks things up like the the right stuff for school. It makes me as other people. When I used my old speech device, it looks like something wrong with me.


It looks I’m like other people.
One day, I am hopeful that Schuyler will make peace with her differences and even celebrate them. It's something that we encourage in her self-identification and always have. But she's an ambulatory fourteen year-old girl with an invisible disability, attending a public school where she desperately wants to fit in. She's not interested in neurodiversity, because she's in a world where difference is problematic. That's not ideal, but it's her Now World. For Schuyler, the iPad provides a way to fit in a little better, and to participate in a world of technology and online social presence. And she does so using the same language system that she learned on her dedicated speech device.

Her situation mirrors a great many AAC users her age. And for Schuyler and her fellow invisibly disabled peers, the iPad has transformed weird looks into curious questions. She has gone from an effective medical prosthesis that almost miraculously gave her language she never had before but also sometimes stigmatized her to a new powerful tool that also functions as a part of a social narrative in which everyday tech is inclusive.

Inclusive. That's important.

No one is suggesting that this technology will work for everyone. But for speech professionals to suggest that consumer tablet technology like the iPad is somehow universally cheap and inferior isn't just incorrect, although let's be very clear on this point. It is WILDLY incorrect. For many users like Schuyler, systems like the iPad have presented a far superior solution. So no, belittling that technology isn't just untrue. It's demeaning. It often represents an attitude that looks backwards, like a turn-of-the-century ice merchant haughtily dismissing newfangled electric ice makers. It attempts to shame users and parents into abandoning their hard-earned new autonomy. "You'll never be capable of supporting and advocating for yourself," the argument suggests. "You need to step back and let the grownups make those choices."

End users and parents and therapists and teachers, they are becoming experts, out of necessity and because they represent the ground troops. They're making their own ice, not just more cheaply but with greater flexibility and efficiency. Professional support entities now need to make some difficult choices about what the future of their industry looks like, and how to create the business models that keep them employed and relevant, and that keep their clients taken care of. These speech professionals are the natural leaders we look to.

But if there's one thing we've learned over the years, it's how to take the reins in hand when necessary. We're mostly okay with that outcome, too.

October 6, 2014

An Extraordinary Story

Today at Support for Special Needs:
In the list of commemorative awareness months, October's got a lot going on. It's Down Syndrome Awareness Month, after all, as well as National Dyslexia Awareness Month, National Breast Cancer Awareness Month, National ADHD Awareness Month, National Domestic Violence Awareness Month, Spina Bifida Awareness Month, and National Disability Employment Awareness Month. October kind of feels like Awareness Awareness Month, to be honest. Relevant to my own life and my own personal perspective, along with all those worthy causes, October is also AAC Awareness Month.

September 15, 2014

The Key

Today at Support for Special Needs:
Schuyler's voice is no longer a thing to squeak out of her iPad in close proximity. It's a thing that can travel beyond her immediate space. In some ways, Schuyler has found a way, though the simple act of handing a speaker over to a listener or placing outside of her own immediate personal space, to improve upon the natural human voice that she has been denied. And in handing that voice over to another, she creates a strange kind of intimacy, better than a shout. In a loud room, Schuyler can put her voice in your ear. I can't do that, and I find myself ever so slightly envious.

December 18, 2013

My All, at Fourteen

This week always presents a natural time to stop and reflect on where Schuyler is in her life, with her birthday only a few days away. It's also the end of the year, so everyone's in this whole "looking back" mood anyway. It's a good time for marking transitions.

This year, it feels even more so. When I look back on Schuyler's first teenaged year, it feels like a great deal of significance took place, not all of it easily measured or commemorated. She doesn't come across as a different person than she was a year ago, but she just seems... more. More complete. More complicated. More damaged. Stronger. A little sadder. A lot smarter. And in some ways happier, too.

Thirteen was the year that Schuyler became serious about using her iPad to communicate. It was the year when the software and the hardware caught up with each other, and despite a few snags and professional lapses, it was the year when she began to assemble a team that is developing a real plan for how she moves forward. She still resists using AAC to communicate; once again, we recently had the semi-regular "But I want to talk like everyone else!" tantrum. I don't think she's demanding that the impossible change somehow. I think she just needs to howl at the sky every now and then, to protest the injustice and to fight the future a little. She's learning to put aside her protest when she needs to, and that might represent the best step forward that she's taken in a long time. This next year will tell.

Thirteen will almost certainly be remembered as her cheerleader year. She's still got some responsibilities for the spring semester, but not that much. This was the year that we crossed our fingers and stepped into uncertainty, handing our daughter over to a situation that could very much work, or very much not.

The verdict? I don't actually know. Schuyler loves cheerleading. She's incredibly proud of herself, and she participates with real joy and enthusiasm. When she's actually cheering, she's on top of the world.

But there are... complications. The inclusive environment that we'd hoped for feels more like the "you can stand here and be happy" school of inclusion. Schuyler hasn't received the extra help that we'd hoped she might get, and wasn't even allowed to move to the back row of girls so she'd have some visual cues to help her, despite both Schuyler and us making that request. The mix of girls broke into cliques almost immediately, and stayed that way. That's never good news for the kid who's different.

It's the little things that start to feel not so small. As we discovered last week, Schuyler's name wasn't even spelled correctly on her locker poster OR the official board at the school, and I guess it's been that way all semester. That might sound minor, but it sends a message.

I asked Schuyler if she'd pointed out the spelling error to her cheer coach, and she said no. She's being frustratingly oblique about the whole thing. She has a good time cheering, but she also says she doesn't want to do it again next year. Schuyler has taken the parts that she's enjoyed, and she's given up on the rest, and I'm saddened for her but also proud of her, for her pragmatism and her unflagging positivity.

A couple of months ago, after her request to move to the second row of girls was turned down, Schuyler and I walked to the car after the game. She down and sighed.

"I wish she would treat me like a real cheerleader," she said. And then she didn't want to talk about it any more.

So. That's cheerleading.

Most critically, thirteen was the year that Schuyler began taking seizure medications. Her neurologist had determined that she was likely having partial complex seizures for some time before, but it was only when the aftereffects of a recent seizure were bad enough to send her home from school that he decided it was time. Her MRI showed changes as well. We didn't disagree with his earlier determination that it wasn't time for meds, and we don't disagree with him now.

She's ramping up to her full dosage; she'll be there in a couple of weeks. So far, she's just beginning to show some side effects. None of them are unmanageable, and she's aware of the changes and tries to compensate for them. She understands that this is all in the service of helping her brain heal and manage itself, and she's game, to the point of clarifying how she feels so that I can get it right for this post. ("Now my brain feels weird and strong, like smart.")

I'm proud of her; she knows that the "brain pills" are fucking with her, but she grasps the big picture and never ever tries to beg off of taking them. We should have a better idea in the next few weeks if this is going to help and if she's going to be able to manage the effects.

So her birthday, and the holidays, arrives at a moment of transition, of a kind of change none of us have ever experienced together. Schuyler's having a bit of a rough time right now, but she's holding things together. She leaves thirteen behind at a crucial time, and she's going to need the love and support and, yes, the patience of every person in the world who loves her.

Fortunately for her, that's a lot of people.

What will fourteen bring? It'll bring high school, two words that encompass all the fear and all the potential and all the excitement in the whole world for her, and for us. Fourteen will include meeting new friends and even new family. It'll be about finding a balance that has eluded her. Balance in how her school implements an inclusive curriculum. Balance in her mysterious brain chemistry. Balance between her dependence on her parents and her desire to take flight on her own. Balance between her natural exuberance and the reality of her world. Schuyler's both younger than her chronological age, and wise beyond her years. That may be the trickiest balance of all for her.

Thirteen was big for Schuyler. Thirteen was unyielding and rough, but it was transfiguring and significant. Thirteen showed Schuyler, in ways it hadn't before, that the world might eat her up if she's not careful, but I think it also might have just introduced her to the empowered young woman she's going to be.

When asked if she had a message for the world, Schuyler said,
"Go see The Hobbit and have a happy New Year!"

November 18, 2013

Her World, Her Words

Today at Support for Special Needs:
But Schuyler also does a lot of free writing, creating text files on her iPad both for homework assignments and just her thoughts as they come to her. And it's here where the results of her increased freedom of expression and communication suddenly become clear. 
It's not perfect; her grammar is touch and go at best, but even then, when she fumbles the language, she doesn't mangle it so much as twist it into something different. Her language can be broken, but also beautiful and free. A little like Schuyler, come to think of it.

October 28, 2013

At the Center of her Own Narrative

Today at Support for Special Needs:
Putting Schuyler at the center of her own story isn't just polite. It's appropriate, and it's essential. She's thirteen now, and while I've certainly spoken on her behalf, or at least facilitated her communication, when she was younger, she's reaching an age where she will continue to advocate for herself more and more. I still speak for her far more often than I should, but sometimes I catch myself. Even as we endeavor to increase Schuyler's communication skills, we're working to provide her with the tools to express herself more comprehensively and training her to use those tools more efficiently and quickly. The goal is to enable her to hold her own, in any social or academic or even professional environment.

September 2, 2013

Everyone communicates

Today at Support for Special Needs:
It's when we are faced with the subtle, nonverbal communication tools of the disabled that we find ourselves challenged to learn the language of the land, and learn it quickly and without translation to ease the process. How much easier it is to simply declare communication as unattainable, and to place the blame for that failure at the feet of the disabled.
2007: Schuyler's howl of joy upon seeing the Empire State Building for the first time.

May 27, 2013


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

May 23, 2013

She's waiting.

Schuyler's IEP Redux took place yesterday. Her previously unsatisfactory speech and language goals were revisited and the new plan for restoring Schuyler's AAC proficiency was worked out, at least on some level. How did it go? I'm not sure how to answer, honestly. The specific goals we wanted were added with a minimum of resistance, and some really good discussion took place that I think will lead to improvements next year. There's a big thing we're asking for that I don't think we're going to get, and it feels important enough that I really believe that without it, everything else might just fall apart, so I'm advocating hard. But no decisions about this big thing were made yesterday, which I suppose is something not altogether like bad news.

The meeting was going well, and Schuyler was listening attentively to our timeframes and our plans for implementing better AAC standards. She answered questions and understood (and agreed to, more importantly) the things we asked her to consider for next year. It was clear she was thinking a great deal about all this, about how her verbal expression needs to take a backseat to her assistive technology for now, and the kind of communication she needs to focus on in the near future. We've talked about all of this before. Schuyler is facing the future of her own communication, and she's making plans.

It wasn't until she passed us a note during the meeting that I realized all over again how much her plans still include the miraculous.

"How I can talk like my friends?"

Schuyler is looking at the things we're asking her to do, and I think she's going to be willing to do the work required to make those things happen, and to improve her situation.

But she's also waiting. She's waiting for someone to tell her when she'll be able to talk like everyone else. She's waiting for a solution, and a miracle. She's waiting for this to be behind her. Schuyler is waiting, patiently but steadfast, for her monster to leave her alone at long last.

She believes she will talk. And no amount of discussion about her brain's deeply, congenitally flawed architecture is going to divest her of that belief.

It's heartbreaking. We have this discussion every so often, maybe twice a year, and she always accepts the reality of what she's told, but with an unspoken caveat.

"I'll accept that. For now."

And the worst part is, I get it, because I don't allow myself to completely let go of this most improbable of dreams, either. I overbelieve, and sometimes that means keeping the door slightly ajar, like accommodating the return of a runaway cat that's been missing for months, or even years. I do my overbelieving quietly, because expressing it out loud doesn't do anyone any good.

Schuyler waits for something that will almost certainly never come. Even knowing the reality of her condition, I can't express that without including the "almost". She waits, and she never gives up on this hurtful dream. Knowing that it hurts her, I still can't bring myself to tell her that it can never happen, because I owe her the truth, even if it's just MY truth. And my truth hasn't given up hope, either.

This summer will mark a decade since Schuyler's polymicrogyria diagnosis. She's been waiting for someone to help her, to cure her, to fix what's broken, for ten years now. It breaks my heart that she's still waiting hopefully. It also binds my heart together a little to quietly and secretly hold onto a few strings of that hope with her.

We're fools, the both of us. I can live with that.

May 6, 2013

Tooth and Claw

Today at Support for Special Needs:
Overall, it wasn't a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we'd resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.
Schuyler's poem, recopied by memory as we took the photo she wanted for her blog post.

April 29, 2013

Schuyler's New Tool

This afternoon, over at the 504:
Most of all, accommodating the social integration challenges of assistive technology gives Schuyler and kids like her the possibility of a measure of independence and self-determination. Those are goals that are both persistent and tenuous. For Schuyler and her friends, self-advocacy is vital, but it flutters through their lives on gossamer wings. It's delicate, and it falls apart so easily.

April 26, 2013

A Question of Trust

I have trust issues. I know this. I'm working on that.

Recently I posted a piece for ("The Negotiating Season") describing my perception of the IEP process. I didn't intend to present it as anything other than my own perspective, but looking back on it now, I guess I did kind of voice it in terms of a near-universal experience. I'm not terribly apologetic about that; my own conversations with countless parents has led me to the pretty solid conclusion that if anything, we've got it better than almost every other special needs family in the world. So, you know, yay for us, but boo to the bigger picture.

It wasn't long before a special educator chimed in ("Negotiating Season? Not quite.") to offer her thoughts. It wasn't rudely done at all, I'm pleased to say. She certainly does have a different perspective, and this is an important dialogue. I'm glad she wrote it.

If I have any quibble with her post, it would probably be the same one that I identified in my own essay. She presents her own experience as something of a universal one. She responded in particular to my point about the inherent conflict between the parent/family position and that of the school:

As parents, we advocate for our kids receiving as much in the way of services as we can get, and we do so knowing that our success could very well mean fewer resources for other students. That sounds harsh, but we shouldn't worry too much about that, because the school's position is the opposite. Giving each student as little as they can in the way of individual resources means more for everyone. It's an awkward dance that shouldn't be about money and resources but absolutely is.

Um, no. We do not sit at the table thinking, "let's give each student as little as we can because that means more resources for everyone." We sit there and think about what will be best for each individual student. As teachers we are passionate about your child- we want your child to succeed and we want your child to make unbelievable gains. We also know that some things that look like they will be beneficial actually can be a determinate to your child's learning. Some services look great but will hinder your child's ability to scaffold his/her learning, transfer skills and be independent. And then there is the legal aspect that we are, in fact, held to. Schools are required to provide what is considered a "free and appropriate public education" (FAPE). Sadly appropriate doesn't always transfer to your child achieving their full potential. This "appropriate" piece stumps us too. It's not us, it's the law and the courts and how the word appropriate is determined. But many of us, if we think there is a way, will fight for you.

I think that sounds wonderful. I also think it sounds like a rare thing. Like, unicorn-level rare.

Look, I've met a great many dedicated parent advocates over the years, and I've met a lot of fantastic therapists as well. And I've met and spoken with and worked with many very good special educators. The head of Schuyler's current team is one of the best yet. She listens, really listens, and she's willing to try things that are out of her comfort zone. If she were the person calling the shots for Schuyler, we'd really be accomplishing something.

But there's a hard reality at play. As we've been learning (or relearning, really) lately, the decision-making process is often in the hands of people who make those decisions based on some very dubious criteria. Not just money, either. Things like territorialism, personal bias, and a condescending disregard for dumb old parents in the process. If I ever allowed myself to believe that the kinds of short-sighted decisions that I chronicled in my book were a thing of the past, I'd be setting Schuyler up for an ambush. And I've been guilty of not taking up the fight with enough energy, particularly in the past few years. We're all paying for my failure now.

Here's an example, and I apologize in advance, because it is both long and detailed. This week, in preparation for Schuyler's IEP, I requested that an outside consultant be brought in to speak to the district's team about issues both AAC-focused and big picture. The response I received almost immediately from the district's assistive technology leader was disheartening.

Our request wasn't even considered. It didn't even make it to the IEP meeting. It was dismissed out of hand. The members of Schuyler's team have already received all the training they need, I was informed. And if dumb dad needed more training on how to use Schuyler's AAC (the same system she's been using since 2005), the AT leader would be happy to provide that instruction herself. There's no need for anyone from the outside, because what could this experienced team possibly learn from someone outside the district?

But the thing is, this district's assistive technology team has been failing Schuyler in various ways both large and small since she came to middle school. It's taken a while for that to become apparent since the special education team at Schuyler's school has been so good at helping Schuyler, but the fact remains that in two years, the focus of Schuyler's communication has shifted away from her AAC. Without the support of the AT team, and without an eye to a future in which she will require a more nuanced and comprehensive way to communicate expressively, she's been allowed to get by on her verbal communication, making herself understood in context and losing much of her proficiency on her device.

How does this happen to a kid like Schuyler, someone who has been, almost literally, a poster child for assistive tech? The answer might just partially lie in the fact that over the past two years, the only contact I've had with her assistive tech team leader has been that condescending, "there there, dad" email I received earlier this week. Until I floated the possibility of having someone with a fresh set of eyes and a new perspective on communication come in to speak to Schuyler's team, the district's AT team was perfectly okay with seeing Schuyler a few times a year and not even formulating any kind of plan for addressing her growing awareness of her difference and her subsequent reluctance to use conspicuous speech technology. They didn't even come up with the plan to switch her to the iPad, and until she began showing success with it, they were actually on record as not officially supporting it.

The point of this long-winded rant is simply this. We are in one of the top school districts in the country, and this kind of thing still happens here. This district has money, and has experience, and a sincere desire to do the right thing. And yet after all this time, here we are, trying to get professionals who have worked with Schuyler since kindergarten to listen, to pay attention to what we want and what we believe Schuyler needs. Bruised egos and stepped-on toes still drive policy from time to time, here in this best of all possible worlds.

Most parents have it worse. Most IEP meetings are charged with anxiety because team members don't understand each others' perspectives. Parents don't feel heard, and teachers don't feel respected. But the fact remains that unless a parent has the resources to bring lawyers, guns and money, they are usually in a position of disadvantage.

So yeah. We'd love it if we didn't feel the need to prepare for a fight before the IEP meeting. We'd also like a pony.

Ultimately, even in a competent district like ours, I don't think my point about the different things we bring to the table is all that problematic. It's a simple statement of the reality of allocating limited resources. We're like dinosaurs, in a way. You've got your meat eaters and you've got your plant eaters, and they're all part of the ecosystem. It's probably not much fun to always be searching for food and killing the crap out of everything; that sounds like a lot of work with not a lot of down time. And it definitely sucks to be constantly on alert, just waiting for some carnivore to jump up and bite your face. But everyone's got their part to play.

Special needs parents are probably herbivores. But we do have T-rex dreams.

April 22, 2013

GUEST POST: The Queen of Monsters

Note: Schuyler and I were talking the other day about how she's going to use her new iPad Mini to express herself. She said she wants to write ("Like you, Daddy-O!"), and I asked her if she wanted to put together a little something for my blog. She said yes.

I helped her spell two words and I helped her clarify one concept that she was having trouble expressing, but otherwise it's exactly as she wrote it. (Before she changed it, she referred to her voice and her brain together as her "word box", which I thought was fascinating.) She even picked (and helped create) the picture.

Now, I'm not sure how to say this next part without sounding like kind of a dick. I'm not posting this for Schuyler because it's sweet, or cute, or precious, or least of all inspirational. If that's what you get from it, then you're missing the point. She's finding her expressive voice. There are some very revealing passages that you're going to miss if you simply think it's cute.

And that would be an incredible shame.

My name is Schuyler Rummel-Hudson and I am a 7th grader in Robinson middle school and I play the drums and the marimba. I like to draw and paint pictures with my friends. I feel happy about talk to my friends with my I-pad mini.

I feel about help others and teachers in my school and everywhere in the world!

I feel different about talk like this and I was born with my voice and my brain.

I feel sad I can't talk like my friends and I feel mad I don't have a voice.

I feel happy using my I-pad mini for the talk with my friends and my teachers and my family.

I going to get great use in the future I grow older. I want to be artist with my mom and I wants to help people are hurt. I wants to write a book about sea monsters and huge and mean monsters with my dad.

I wants people to know me is I love monsters and Greek stories. When I was little girl I feel tiny and alone and now I feel HUGE! I am going to BIG things with my family and my life in the world.

Your author,

Schuyler Rummel- Hudson :)

April 16, 2013

After Wooster, Part One: Vox humana

There's a great deal I could take away from my visit to the College of Wooster to give a speech last week.

I could share stories about good work being done by extraordinary people, or interesting new technologies and how they are being implemented by educators and therapists and companies like PRC (whose headquarters I visited and who couldn't have been nicer to me). The truth is, I took away more than I could ever explain. Wooster was a transformative experience. I showed up on Monday one person; I left on Wednesday a wholly different one.

But what I really want to talk about is dignity. Self-determination. What it means to be human, and to have value, and to recognize that value. And what it truly means to communicate.

Because this is the work being done. Its not about speech technology, or therapy, or language systems. Not entirely, or even mostly.

In part, it's about tools. After Wooster, I am more convinced than ever that the key to successfully unlocking communication among the nonverbal like Schuyler lies in giving them a toolbox that is bursting with options, many of them self-driven and perhaps hard for most of us to grasp, and then to get out of the way and let them take the lead in how they can most effectively and comfortably make themselves truly heard. That sounds obvious, but in fact it's an idea that frequently gets lost.

Many of us are out there trying to help our kids or our students or clients, and far too often we want so much to give them a magic pill that we ignore how we ourselves communicate, not just through spoken words, but through facial expressions, gestures, miming ("I said I'm walking against the wind! Also, I'm trapped in a box! Come on..."), text messaging, note passing, whatever. We don't think about this toolbox because we're accustomed to having a spoken language default. And I suppose we think in terms of a primary tool when we try to assist our nonverbal charges, to the point that we really only give them one or two big, impressive tools to be used in specific ways, dictated externally by others to somehow enable and allow expression of what's within. God knows I've been a serial offender in this regard. More ways to communicate means more options, and more possibilities. Using one tool does not make you less likely to use another. ("If he uses AAC/sign language/whatever, he won't be compelled to develop verbal speech.") It's a popular misconception, and it simply doesn't work that way.

The reality of communication defies the magic pill. Lindsey Cargill, speech language pathologist at the Helping Hands Center for Special Needs (and tireless advocate), points to a 1976 study by Mele Koneya and Alton Barber. It shows that a person's message is comprised of 55% body language and 38% facial expression and intonation. That leaves just 7% for the actual words themselves. Another study from 2009 shows that gestures are processed in the same part of the brain as spoken language, illustrating that gestures themselves are linguistic in nature. A third study found that kids with autism who gesture are judged socially to be more communicatively competent than their peers.

The other tools matter. And we need to pay attention to them, and treat them with seriousness when they are hard to read most of all. Depending on a single method of communication, one that we deem to be somehow appropriate or ideal, ignores the reality of how we communicate.

It can be complicated, too. In a way, Schuyler is the perfect illustration of how those tools really do matter. Her reluctance to use her AAC has grown over the past few years, in large part I believe because in everyday social situations, she brings all her tools to play. Facial expressions, gestures (oh, the gestures) and her intonation have been doing the heavy lifting for a while now. She's reached a critical point where she needs to seriously refocus on AAC to give her the ability to independently express herself more comprehensively and creatively.

How did that happen? How did a kid as deeply invested in assistive speech technology reach a point where she needs to recommit her efforts (and more to the point, the efforts of her team) to robustly utilize her speech technology? I believe it's because she has embraced the temptation to "pass" as much as she can as neurotypical, as most of the time, she's succeeded. I never want her to feel like she needs to pass, to hide who she is, but she's a thirteen year-old girl in the world of middle school. The pressure to fit in is enormous.

For Schuyler, and for a lot of nonverbal young people, there's a contradiction to be sorted out. She wants to be like everyone else, but at her age, communication has become central to that for her peers. Thirteen year-old girls talk, a lot. And it's a very specific kind of talk. It's constant, and seemingly random but loaded with subtext. For Schuyler to be a part of her peer group, she's going to have to find a way to truly join that conversation, and that is probably going to mean embracing her speech technology in a way that she's reluctant to right now.

The tool sets her apart. The tool gives her a kind of comprehensive language that she otherwise lacks, but it does so at a different pace, and in a way that is inherently unnatural. Our challenge in the coming months is to refocus her, yes. But it is also going to be to reconvince her. That's going to take some work.

Which is fine. I think it's going to be okay. I believe in Schuyler, as always, and in the possibilities. I've become a big believer in her future, and in my own. Our whole world seems transformative now. It's a compelling feeling.