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What We Need From Schuyler

April 22, 2013 in Featured by Robert Rummel-Hudson

photoI’ve written for years about what Schuyler needs. From her teachers, from her parents, from her friends. From the world, really.

But let’s talk about something else. Let’s discuss what the world needs from Schuyler, and from kids like her, inasmuch as any kid with a disability is like any other.

Schuyler needs to attend school, and to spend as much of that time in classes with her neurotypical classmates, learning as much as she can on their level and finding her way through the bigger world around her. But the members of her school community need her there. Desperately.

Her teachers need to find the ways to reach her. Schuyler doesn’t follow some of the standard rules for kids with disabilities. She doesn’t always respond well to routine; many special educators will tell you that structure and order are the most important things to bring to kids with disabilities like hers. But Schuyler thrives on the new, and the teachers who reach her best are the ones who figure that out early on. Special education teachers who depend on experience to guide them are perhaps predisposed to failure. The lessons learned from individuals are of limited value. Previous experience provides a place to start, but the thing that makes teaching special education so challenging (and probably what makes it rewarding, too) is how every student requires an educational approach that is wholly unique. Schuyler is an unusually vivid example of the principle.

Schuyler needs to be around neurotypical classmates, she needs to develop strategies for moving through and functioning within neurotypical society. She needs to be able to do that on her own terms, with a recognition of the importance of her diversity. Learning to navigate those complicated relationships is going to be important, and her neurotypical classmates are the key to making that happen.

But there’s a dirty little secret of inclusion in public education. It is Schuyler’s neurotypical classmates who stand to benefit the most. Schuyler is the best friend anyone could hope to make. She’s funny and wild and most of all, she is fiercely loyal. But being Schuyler’s friend means learning to accommodate her differences. It means slowing down for her communication and allowing that her very different brain gives her a very different outlook on the human experience. There are deeply satisfying rewards to Schuyler’s friendship, and to friendship with her disabled peers. But those rewards aren’t just handed out. They must be earned, with patience and openness. Kids who never have those relationships in school grow up… incomplete, I’d say. Some of us are lucky enough to find the path one day, even if we never fully complete it. Kids who know Schuyler and her people from the beginning get there sooner. They are more complete than I could ever hope to be.

Schuyler needs family. She needs the care of those who aren’t supposed to turn away, no matter how challenging she gets or how many times they get it wrong.

But God, do we ever need her. Schuyler is a lifelong commitment, but she’s also like a warm star at the center of my solar system. When I get lost, I know where that center is. When I get disheartened, I know where to turn to for warmth. The complexity of parenting Schuyler is something I can’t even describe; in ways both large and small, the reality of being Schuyler’s father changes every day. It’s work with no job description; it’s building something large and complicated without a blueprint. It’s making it up as I go.

And yet without that work, I’d be a shadow of the person I am. Schuyler doesn’t exist to teach anyone a lesson or inspire us to be better people. That idea is frankly offensive. But those of us blessed to have someone like Schuyler in our lives would be foolish to miss the opportunity to grow into more complete human beings as a result of the authentic relationships we enter into with them. On their terms, by their rules, on the surface of their worlds.

We need Schuyler. We’re lucky to have her.

Speaking for Herself

May 28, 2012 in Featured by Robert Rummel-Hudson

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

In ways both large and small, Schuyler is learning to advocate for her own self-interests.

A few weeks ago, she attended her first IEP meeting. It’s true that we’ve fallen out of love with Schuyler’s school district, and they’ve been particularly bad this year where her AAC usage has been concerned. I must admit, however, that the thing that I actually like about her school program is that beginning in 7th grade, unless there is a compelling reason against it (and I can imagine that for a lot of kids, there are some very good reasons), students are required to attend their own IEP meetings. Schuyler is in 6th grade; this was her practice run.

I wasn’t sure what to expect, but the meeting went well, at least her part of it. And it went well because Schuyler took ownership over a particular part of her future. Schuyler informed the committee that beginning next year, she wants to use an iPad instead of the dedicated speech device that she’s been using for the last seven years. The team member informed us that the school district wasn’t supporting iPads as AAC devices in the classrooms. We informed them that we didn’t really care. Schuyler made her choice, and we were supporting her, and that was pretty much that.

Furthermore, Schuyler announced that she had chosen to use the relatively new (and vaguely controversial) speech app Speak for Yourself as her mode of communication. She told the committee that she could use her iPad for class in different ways, not just as a speech device, and she pointed out that with the iPad, she looked just like everyone else.

Schuyler made a choice, and it was at least in part a choice based on her desire to “pass” as neurotypical as much as she can. I confess, one of the reasons for her choice, to look like everyone else, made me a little sad. “Passing” feels like a denial of who she really is, and it also feels like an endeavor which may ultimately be doomed to failure. But at Schuyler’s age, and given that her disability is largely invisible, it was a perfectly understandable choice. I am immensely proud of her, not just for making the decision but for expressing her reasons for doing so in an extremely articulate manner. She knows how she wants to communicate. She understands.

This is Schuyler now. She has fallen in love with communication, even as she struggles to find her own way to be heard. She’s writing short stories and reaching out to friends via email and text messaging. She is advocating for herself, and not with anger or a sense of separation from the grand rough world around her, one that she would be perfectly justified in distancing herself from. I watch Schuyler make her way in the world with positivity and courage, and it settles my oft-fretting fatherly heart. There’s a lot I don’t get right in this life, but I feel sometimes like I’ve gotten it right with Schuyler. I sometimes manage to feel like she’s going to be able to make it through the world, communicating on her terms and with real happiness.

Schuyler recently rediscovered her long lost digital camera, and she’s been taking a lot of photos of the world around her. It’s fascinating to watch that world through her lens. It reminds me that for Schuyler, communication is about the words, yes. But it is also about the touch, and the laughter, and the anger, and about what she captures wordlessly with her camera and her art.

Schuyler still has her secrets, and she still has more than most people. But she’s making her own choices about what to keep secret, and from whom, and most of all what to offer to the world around her, if we only have the sense to hear.

———

 

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The End of an Experiment

May 14, 2012 in Featured by Robert Rummel-Hudson

Back in the summer of 2005, when Schuyler was first beginning her journey with augmentative communication technology and was being served very poorly by her Austin-area school, we visited with members of the public school district’s assistive technology team in the north Dallas suburb of Plano. We were expecting to learn that the Plano schools supported students using AAC devices in the classrooms. What we discovered instead was that beginning the next semester, a pilot program would place about a dozen students using AAC devices in a single classroom, with the goal of training them on their devices and building their self-esteem and their sense of community while preparing them to be mainstreamed using assistive technology. Schuyler was invited to join that program, and we moved to the Dallas area within a few short weeks.

It was an innovative program, with maybe half a dozen parallels across the country. It was the subject of the final chapter of my memoir and subsequently served as a model for similar classes in various parts of the country.

This week, I learned that as of next semester, the Plano Independent School District will be discontinuing the program.

This wasn’t a huge surprise, to be honest. A few years ago, when I met with the district’s director of special education, it was clear that a philosophical change was occurring. It wasn’t that the district wasn’t supporting the use of AAC technology in the classroom. Quite the opposite appears to be the case. When the AAC class was begun in 2005, it contained a dozen students, with a handful of others scattered throughout the district. At the time of my meeting in 2010, there were about eighty AAC users spread out among the schools of the district. I can only imagine what those numbers would reflect today.

So why was this class discontinued? Parents of special education students see it all the time. With changes in special education administrators come different philosophies, and implementation of those philosophies can feel arbitrary to those who have been functioning under the previous system. Also, Plano’s AAC classroom was expensive to maintain, not just in materials but also in its extremely skilled faculty and staff. With a change in administration and a new commitment to a more fully realized concept of inclusion, the decision was made to support the one or two AAC students on any given campus within the parameters of their own curriculum rather than expanding the AAC class on additional campuses to accommodate the growing AAC student population. The special educators on each campus would be expected to support those students and their AAC devices. Specific support from a traveling assistive technology expert would be provided as needed.

I must confess, I have mixed feelings about this. On one hand, the program really was remarkable. I still get email from teachers and speech language students who have read my book and are interested in learning more about how the class works. The biggest advantage that the class offered wasn’t a pedagogical one. The primary benefits were social, providing a safe environment where these kids could learn and communicate in their own weird little way without self-consciousness. Anyone who has worked at all with children and AAC technology can tell you how implementation will succeed or fail largely on how enthusiastically the user buys into the concept in the first place. Getting past the social stigma of using a speech prosthesis is not a small hurdle.

At the same time, I understand that it might have been unsustainable. And I also am intimately aware that the technology may be moving far too fast now for a concentrated classroom program to keep up. When we informed Schuyler’s IEP team that she would be switching to the iPad next semester, we were informed that the school district wasn’t yet supporting the use of iPads as speech devices, primarily because none of the apps were actually developed by speech language professionals. (This is in fact entirely untrue; I believe that pretty much all of the most popular and respected AAC apps were created by those professionals. Well, of course they were.)

But the honest truth is that none of the teachers Schuyler worked with this year were terribly familiar with the technology Schuyler was already using, and as a result, she actually rarely used it. Her ability to make herself understood verbally was seen as progress, and adequate to most of the tasks she needed. Ultimately, I think that was an error in approach, robbing her of a level of nuanced and detailed expression that she’ll need to recapture next year if she’s going to make it. That will come, I believe, and it will do so with new tools, regardless of the levels of official support.

Ultimately, I think the AAC classroom program was one that could have been a much greater success than it turned out to be. But to do so, it would have required an exponential growth that might have been financially unfeasible, and also a much greater flexibility in regard to new technology. I hope that similar programs across the country will be able to solve those problems, because I still believe that the philosophy behind those programs is sound. And I feel pretty confident that it made the difference in my own daughter’s life.

Voices of Change

January 23, 2012 in Community Wisdom, Featured, Featured Member by Robert Rummel-Hudson

It’s easy to miss how the world changes around us. It’s easy to miss as we change with it.

So much time has passed since Schuyler began using Augmentative and Alternative Communication technology in 2005 that it’s almost as if she’s been using it all along. In my mind, there are two Schuylers, the ethereal one who existed very much in her own internal world before AAC, and the expressive, eager to participate Schuyler I know now, the one who works hard to be a part of the world and the society around her, and mostly succeeds. The Schuyler I describe in my book is not the Schuyler I know now, and I truly believe that AAC made the difference.

She began with the most basic of tools, a simple device with a handful of buttons that she could wear around her waist. It didn’t give her all that much in the way of new communication; she already knew and used sign language for all the basic statements enabled by this device. But the change for her was dramatic. She loved it, and she used it almost non-stop during the brief time she had it. It was a game changer for her, we could see that immediately. Schuyler was in love with having a voice, the one thing she’d been denied in her young life until then.

From that simple experiment, Schuyler became immersed in AAC. After a fight with her school district and a remarkable online fundraiser, we were able to give Schuyler an advanced dedicated speech device. In the years since (God, has it really been almost seven years? That can’t be right…), Schuyler has communicated using the Vantage, and later the Vantage Lite (hot pink, naturally), produced by the Prentke Romich Company. This device has done more than give her expressive language, although it has most certainly done that. Through its core language system, it helped to teach Schuyler and then reinforce for her the basics of how language works.

One of the things that I remember telling people about her device, the one she calls Pinkessa, is that it could very well serve her into adulthood, but the changing world, and our changing daughter, will probably have different plans. The love of words and language that Pinkessa instilled in Schuyler is driving her in new directions, and towards new technologies. Schuyler uses an iPad for a number of tasks, ones that excite her, things like learning sign language and seeing the night sky in new ways and combining the written word with visuals. She uses it to access the web and look up information for her homework, and to watch streaming movies when she’s stuck at my office with me. (And yeah, Angry Birds. Well, what are you going to do?)

And she uses it sometimes to speak, at the present time using an app called Proloquo2Go. Although she prefers the language system on Pinkessa, Schuyler gravitates towards the iPad. She seems to intuitively understand that the world is paradoxically bigger and at the same time more immediately available to her than either she or I ever understood before now. Schuyler also uses my old iPod Touch to text with friends and family now. She wants a phone, not to talk because she understands how limiting verbal speech is for her, but so she can text. When Schuyler communicates via text messages, she’s not the poor little disabled girl who can’t talk. She’s like you and me. She’s funny and she’s curious and there’s no impediment to her self-expression. (She has a particular love of the little Emoji characters; if you text with her for even a short time, she will inevitably send you a little farting monkey.)

Five years ago, I couldn’t have predicted how Schuyler would be nudging open the door to the world like she has just in the past year or so. That door has gently and quietly burst open for her, and I watch with fascination as she begins to find her own way in a larger universe. I like to imagine what her world might look like in another five years, although honestly, I know my imagination is far too small.

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