Schuyler Answers

Back in June ("Schuyler Will Now Take Your Questions"), I invited you to submit questions for Schuyler to address in our joint presentation, the first we'd ever given, at the Region 10 Education Service Center's Summer LifeSkills Boot Camp 2015. The presentation took place yesterday, and as I mentioned over at Support for Special Needs, it went really well.

I think it's safe to say that for as long as Schuyler wants to do it, and assuming we're asked to speak again, this will be the format my future presentations will follow, with ever-increeasing participation from Schuyler. She says she's game. (She wants to present in Hawaii. I'm not opposed to this idea.)

As I promised at the time, and of course with her permission, here are some of Schuyler's answers and statements from yesterday's presentation.

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INTRODUCTION

Hello, my name is Schuyler Rummel Hudson and I am a tenth grader at Jasper High School. I'd like to talk about my life and tell you why I've been using my devices to help me talk. First I used a HipTalk, then my Vantage, which I called the Big Box of Words, and then my Vantage Lite that I called Pinkessa. Now I use an iPad Mini called the Queen of Monsters with my speaker. I am happy to be here with my father and mother to share my story with all of you.

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OBSERVATIONS ON HER AAC CLASS IN ELEMENTARY SCHOOL

In my AAC class at Gulledge, we learned to use a computer, our devices, and to read books. Every day I went to my other classes after the AAC class and used my device in class. Back then, my teachers worked together, but now they don't. Some of my teachers did know how to use my device, and some didn't with my big box of words. Now, most of them understand better than back then. It think it’s because I have an iPad and they know how iPads work. I learned a lot about how to use my devices back then. I don't think I need a class now but I miss being with my other friends who talked like me.

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USING HER IPAD

Which app do you use for speech? Why did you choose that app?
LAMP Words for Life, because it works like my old devices, the Vantage, and helps me to talk to others.

What else do you use your iPad for?
Games and movies and drawing and listening to music. I use it to send messages and Facebook.

What are your favorite games?
Monument Valley and Subway Surfers

How do most people who are meeting you for the first time react when you talk with your iPad? Positively, or negatively?
Positively. They think it is cool and ask questions about my iPad.

What is your favorite accent to use on your device?
I use Emma voice with a British accent.

If you could change one thing about your communication device, what would you change?
I like it the way it is. My iPad is not loud but I have a speaker.

Do you notice people treating you differently when you are using an iPad than when you were using the Big Box?
With the Big Box of Words, they think that I am dumb and weird. When I use my iPad, people think I am like anyone else.

How would you explain your speech device to someone who had never seen someone talk like you do before?
It speaks for me because my brain doesn’t want me to talk.

Can you talk a little bit about how you make the choice to use your own voice or use your iPad to communicate? For example, which situations you would never use your iPad and which situations you would always use your iPad?
I sometimes try to talk with my voice first. When people can't understand me, I use my I-pad to talk. I use it at school in class. I also use it to order food when I go out with my parents.

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NAVIGATING SCHOOL WITH HER DISABILITY

What are some things that teachers have done that have helped you to have good experiences in the classroom?
I get help with math and science at my school. If I don’t understand the problem, my teachers tell it to me different.

What are some things that teachers did that you didn't like, or that you found unhelpful?
Sometimes they go too fast and they don’t help me.

What is the one thing you hate people presuming about you, before they know you?
They think that I am dumb and weird and I am not smart at all.

What has been your favorite thing about school?
Meeting new friends and teachers. I like to learn new stuff. I like playing percussion in the Jasper Marching Band.

What is your least favorite thing about school?
Homework

(Accompanying slide)

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ON BEING SCHUYLER

What do you plan to do after high school?
I think I am going to travel to Hawaii and China. I want to get married and get a job.

What is your favorite movie? Why?
I have a lot of favorite movies, it's hard to pick. I like Jurassic World and Godzilla and Pacific Rim. The movie I’ve liked the longest time is King Kong. That will always be my favorite movie. I like monster movies with my dad.

What is your favorite thing to do for fun?
Play the Wii U with my parents. I also like to swim and play soccer and baseball in Miracle League.

What made you decide to dye your hair?
I want to be different but I want to pick how I’m different.

Who do you see as your role models or people you really admire?
Amelia Earhart and Stephen Hawking

What do you want to do in the future?
Maybe to help sick children and the poor and people like me with little monsters of their own.

If you could tell people one thing about your little monster, what would you tell them?
It makes it hard to talk and sometimes it makes it hard to understand things. My monster is a butthead!

If you could tell your little monster one thing, what would it be?
Get out of my head!

What kind of music do you listen to? What is your favorite song?
I have a lot of favorite songs, it is hard to choose one. Right now I like Waiting for Superman and Black Widow and Release Me. My favorite artists are Lady Gaga and Florence and the Machine and Selena Gomez.

I'd like to know, what do you like about Plano and the Dallas/Fort Worth area?
I like Six Flags, the Dallas Opera, Hawaiian Falls, Mexican food, and the zoo.

If you moved away, where would you like to live?
England or Hawaii or Vermont.

Do you see yourself becoming a writer like your dad one day?
Sometimes. I like to write stories and poems.

What do you like to learn about?
Art and science

What is your favorite season and why?
Summer, because I can see my dad's friends and have fun and swim!

What is the best Halloween costume you have worn?
I have a lot of favorites. Medusa and Amelia Earhart and Brunhilde the Valkyrie.

(Accompanying slide)

What skill do you want to improve?
Listening and being a percussionist who plays the drums.

If you had a ton of money, what would you do?
I would travel and see the animals in Africa.

What is your best personality trait?
I am funny and always happy and a good dresser.

What do you love about your life?
Having the awesome parents and the best friends too.

What is one thing you thought people would ask you but no one did?
No one asks about my favorite monster.

There was an answer to that question, too...

A Partnership

This morning at Support for Special Needs:

Excerpt: 

You may consider this a new policy of mine. I'd love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I'm going to have a partner from now on, advocating for herself in her own strong voice. This is the path she's chosen, and I couldn't be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.

Rough Numbers

Today at Support for Special Needs:

Excerpt: 

The article suggests that with the passage of the ADA, many were led to believe that the struggle for disability rights was over, when in fact it was just beginning. It's more like people with disabilities who have been fighting for equality were finally told "We recognize the battle you've been waging, now here's a bazooka." Or perhaps more accurately, "Here's a rock."

Steps and Stumbles

Today at Support for Special Needs:

Excerpt: 

How do you discipline a kid for whom her own actions are as inexplicable to her as they are to you? How do you move forward when the lessons built into the situation haven't been learned, by any of the parties involved? How do you face a future where your kid's independence is due to be recognized by the law far earlier than is appropriate, or even feasible? And how far should you go to take pieces of that legal independence away from them? You can tell yourself it's for their own good, and you can even mean it and be completely correct, but that doesn't diminish the feeling that you're taking something precious away and stealing from them the thing that they, and you, have always valued and dreamed of the most.

Twelve Years

Today at Support for Special Needs:

Excerpt: 

Schuyler's monster doesn't have a proper birthday. Perhaps it could be said to share Schuyler's. Even that doesn't feel quite right, because it was there from very early on, probably the second trimester or so, a shadow unseen inside her tiny developing mind. She wasn't yet a baby, but her monster was already a monster, only waiting to be brought into this world with the sole purpose in life to bedevil the life of my daughter.

Future Perfect

This week at Support for Special Needs:

Excerpt:

I feel fear for Schuyler, so much so that it weighs down on me, probably more than most people realize and sometimes more than I think I can handle. The future is an oppressive thing for me, but every now and then, with Schuyler's help, I can allow myself to imagine that it might not be bad, that she might have a shot at being happy, and maybe, just maybe, so might I.

Assembling Schuyler's Armor

Today at Support for Special Needs:

Excerpt: 

When things go wrong, when Schuyler meets up with someone who doesn't understand or care, when she hears the words meant to demean her or is simply treated with disregard, I think I've taken that as a larger affront than it probably is. They're not just hurting her feelings or standing in her way. I think on some level, they're tearing down her world. And that's something I simply can't let go unchallenged.

Untold Stories of the Secret Heart

Today at Support for Special Needs:

Excerpt: 

There's so much that Schuyler is going to learn about her emotions, and the emotions of others. There's so much I want to tell her, the lessons I've learned the very hard way in my own life. I want to explain to her that her heart is fragile, but it's also tough, and that may not seem to make sense but one day she'll get it, when she thinks it's too broken to survive until she wakes the next morning and the morning after that and realizes that it perseveres. Somehow I want to tell her that she'll have people in her life who don't like her, and that's just part of life, but the hits that'll leave a mark won't come from them. They'll come from the people she loves, and who maybe even love her, but who won't be careful with her heart.

The Freedom of Summer

This morning at Support for Special Needs:

Excerpt: 

Summer is Schuyler's time to be herself. She doesn't know what that means, not exactly, and there is always the possibility of change, something that scares the adults in her life a lot more than it scares her. But given her own space and her own pace, she's got a pretty fair chance of beginning to put all the pieces together, and preparing for the chaotic and unpredictable life that awaits her.

Filing STAAR test results in the appropriate place.

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 

Abstract:
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 rob.rumhud@gmail.com. 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.

Might Have Been

Today at Support for Special Needs:

Excerpt: 

Schuyler is, by a country mile, the happiest human being I know. And it's not because she doesn't know any better. It's because she does. She gets the beautiful parts of the world, while I often only see the pain and the cruelty that it holds for her and for us all, I guess. Schuyler holds on to the aspects of the world that she cherishes, and she tries very hard to throw away the rest. I don't know if that's a plan for success or if it's going to bite her face off one day. I only know that it works for her, and it gets her through days both simple and complicated. 

And I know that in that regard, I envy my daughter very, very much. As I should. As should we all.

Transformation

This week, at Support for Special Needs:

Excerpt: 

Because she knows. Schuyler knows she's different. She senses it every time she verbalizes in public and gets that quizzical look from strangers. She absolutely knows it when she orders at a restaurant, her iPad reading her order aloud through a Bluetooth speaker with a crisp English accent, an accent specifically chosen because why not? Schuyler watches the kids around her grasp concepts that she has to work hard to handle, and she knows that this happens, the difference happens, because her brain isn't like everyone else's. In a world of special snowflakes, Schuyler is another thing altogether, and of this she is entirely conscious.

The Faith of Monkeys

Today at Support for Special Needs:

Excerpt: 

When you see monkeys travel through the jungle, the thing that is most striking is their speed. They move fast, and when they release their grip on one vine, they are already reaching for another. They operate on faith. Faith that the jungle is healthy and the growth is consistent. Faith that there will be another vine waiting, and they won't reach out and find only air and a long drop to the jungle floor. It's not hard to imagine why parents of special needs kids might envy our monkey cousins and their confidence, and their faith that they won't fall.

A writer in the family

Today at Support for Special Needs:

Excerpt: 

These days, Schuyler is interested in writing, which of course makes me happy in the most egotistical and selfish way. She writes, and not just for class but rather because she likes it. She wants to take her imagination and put it into motion. She doesn't usually write about herself or her own life, not just yet. Schuyler creates stories, almost always of the fairy tale variety, and she peoples them with heroes and villains and princes and queens, and monsters. Always monsters, usually antagonists but not always evil. Even now, she understands that sometimes the monsters of the world simply have their own agendas, and they need to be taken seriously.

Running the clock

Today at Support for Special Needs:

Excerpt:

We talk about this a lot, and I suppose I write about it pretty often, too. I won't apologize for the repetition; it's the colossal bugbear that haunts our thoughts and disrupts our sleep. Three years. Just three years remain before Schuyler is out of school. Three years to figure out what that looks like. One more year of high school, then two years of senior high. (Don't ask; her school district does things weirdly.) And then she's away, off on the next adventure. What that looks like, no one knows. But it's coming up fast, and that inevitability is beginning to inform more and more of her life.

Between Friends

Today at Support for Special Needs:

Excerpt: 

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.

Tag Out

This morning, at Support for Special Needs:

Excerpt: 

I need to quit worrying about the people who are supposed to be helping our kids but aren't, or about the society that should be opening doors for them but is politely but firmly closing them instead. For just a little while, I need to step away from the fear, and from the sense of injustice and from the feeling that I am growing old at a far too rapid pace and that time is running out for me to be able to fix everything for my little girl before I go, because goddamn it, that's what fathers are supposed to do.

The Little Fish

This week at Support for Special Needs:

Excerpt: 

As parents of kids with disabilities, we step up to the big fights, and while they can be exhausting and definitely take their toll on us, I think in some way we prefer them to the alternative. The struggles that truly tear us down and leave us dispirited are the little ones, the tiny indignities that defy our long-developed skills for the Big Fight. They can't be confronted with a sword, and we're not necessarily adequately armed with flyswatters. We fear our children being eaten by alligators, only to discover that they are more likely to be devoured by little fish, one tiny bite at a time.

The Invitation Game

Today at Support for Special Needs:

Excerpt: 

Sometimes I learn things about Schuyler the hard way. Important things. Things I feel like I should have figured out by myself. Often they're things she keeps to herself, little pieces of inner sadness that she silently holds in her pocket until the day comes when she hands one to me. I don't think she shares so that I can make those tiny sadnesses go away; at least I hope not, because otherwise I'm failing her miserably. I think Schuyler just wants to be heard, and for her anxieties to be aired once in a while. That seems fair.

Schuyler and the Big Questions

Today at Support for Special Needs:

Excerpt: 

When speaking to groups where I know there are going to be a lot of people of faith present, I still talk about God. I talk about Faith and God and my own broken spirituality and what kids like Schuyler may be able to teach us about such things. I kick open the door to a conversation that isn't about convincing anyone or being convinced, either, but rather an exploration of perspectives that might just bring us all a little closer together. I'm not religious, and I'm certainly no Christian, but I don't need to be snotty about it and assume that believers won't listen to me or treat me with respect. I like those conversations. I try to draw them out with my speeches when it's appropriate.

Letter of the Law

Today at Support for Special Needs:

Excerpt: 

Dignity isn't a treat for the fortunate. It's a basic human right, one that you get to put in your pocket the day you're born. It's not something you're granted by the world. It can't be given to you; it can only be taken away.

Dragons Transformed

Today at Support for Special Needs:

Excerpt: 

Sometimes I don't have words for the things that keep me up at night, the things that keep so many special needs parents awake, staring at the ceiling. Institutions that don't adequately value the amazing human beings they've been entrusted with. Voices from the outside tearing us down, in the guise of civic concern or advocacy or just plain ugliness. And most of all that wordless thing waiting in the future, the one that scares us most of all because we can't see it, we can't even imagine it, and when we ponder it, we are reminded of our own aging frailties and a clock that feels like it's running out far, far too fast. I don't always know what to say about these lurking phantoms and monsters. I'm struggling with them myself.

F Word

Today at Support for Special Needs:

Excerpt:

For Schuyler, I don't think it's being different that bothers her. She'll proudly tell anyone who asks what church she goes to, for example, that she is a theist, which means she believes in God but not religion. In this town, that's a bold statement. But the difference of disability still rankles her. She can hear a thousand times that being different isn't a bad thing, and I'm pretty sure she even believes it, up to a point. But only just to that point, somewhere shy of emotional truth.

Families Don't

This week at Support for Special Needs:

Excerpt: 

When we talk about a disability community, what I think we're really describing is a family of sorts. Much like family, very few of us actually chose this community as our own. We'd much rather be a part of the Easy Living On A Beach Somewhere Community, but this is the one we were handed, and we're mostly stronger for it. The beach still sounds nice, but whatever. Those families are soft.

The Separation Box

This week at Support for Special Needs:

Excerpt: 

This past week was IEP Week, which makes it sound a lot more fun than it is. (It can sometimes feel a little like Shark Week, probably for the wrong reasons.) Our experiences as special needs parents are incredibly varied and diverse, but it feels like for those of us with kids in public schools, the IEP is a universal hurdle. Sometimes it's a success story, but it's hardly ever an easy one. Many of us believe that in a perfect world, every public school student would have an Individualized Education Program. That's mostly because every student learns differently and would benefit greatly from such a focused and customized approach to their education. But there's this teeny tiny part of us that also just wants to share the fun with everyone. Misery loves company; anxiety does, too.

Dirty Bird

Today at Support for Special Needs:

Excerpt: 

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.

The Technological Why

Today at Support for Special Needs:

Excerpt: 

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.

In Defense of Monsters

Today at Support for Special Needs, with a lot of input from Schuyler:

Excerpt: 

Schuyler doesn't hate monsters. She loves them, because she understands them. Monsters are misunderstood. We think monsters are scary because they're different, and she's learned the hard way that the world doesn't like different. And I've always recognized that Schuyler's view of monsters makes for a perfect metaphor for her disability. I use it because it's brilliant. I don't mind allowing the world to give me credit for this metaphor because I'm selfish that way, but like most of my views on disability and how it affects my daughter and the people around her, Schuyler is my teacher. She has been from the beginning.

Art by Laura Sako

A Complicated Girl

This week at Support for Special Needs:

Excerpt: 

Schuyler's evening was complicated. That much I can say. It was complicated for all the reasons that are obvious, and for all the ones you never think about. It was complicated because she looks like any other fifteen-year-old girl dressed to the nines at a high school dance, and it's complicated because she's not like any other girl there, or most places. It's complicated for the things she understands about her peer relationships, and it's complicated for the nuances that escape her. Her feelings about boys are complicated, and her inability to adequately express or process those feelings are also very, very complicated.

Co-presenter

Today at Support for Special Needs:

Excerpt: 

Schuyler is growing into an advocate for her own needs and wants, although it's not always easy for her. She gets nervous. She doubts the value of what she has to say sometimes. But at the same time, she sees how much people want to hear her perspective, and she is beginning to get a sense of what her future as an advocate might look like. She's taking the first steps into a life where the person who speaks up for Schuyler is Schuyler.

July 2008. I'd like to have that hair back, please.

Impossible Things

Today at Support for Special Needs:

Excerpt: 

Doctors and teachers and therapists, they can be a great many things, but they're generally not very skilled prognosticators. To be fair, I don't think very many of them actually claim to be able to tell the future, and I imagine most of them don't even want to try. As parents of kids with disabilities, we ask them to. We demand that they try. Our world and that of our children is already far too full of uncertainty. As a result, we ask for information that our kids' caretakers and educators can't possibly possess. So I recognize that we really do sort of have it coming.  

But God help me, I do so love it when they're wrong.

No Easy Answers

Today at Support for Special Needs:

Excerpt: 

It's that time of year again, the beginning of the spring semester, when all the least fun parts of Schuyler's public school experience begin to rise up out of the swamp and demand attention. Soon we'll start worrying about the STAAR test, Texas's state-mandated standardized testing. It's the Godzilla monster that stomps through our little Tokyo ever year. We also begin preparations for Schuyler's next IEP meeting, and the future that it portends. (SPOILER: More monsters, pretty much forever.)

A World of Fairness

This week at Support for Special Needs:

Excerpt: 

I'd like to suggest a new attitude as we begin a new year. There's a lot of concern out there about fairness and balance and making sure no one gets anything they're not entitled to. I think we've got that covered. Perhaps it's time for a little imbalance. Maybe, just maybe, the world won't spin off its axis if we worry just a little more about those families for whom the idea of fairness has always been something of a cruel joke. Not charity, but just a little empathy. Perhaps a pinch more humanity than we've been accustomed to tossing into the mix.

Theories of Everything

This week at Support for Special Needs:

Excerpt: 

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!

Christmas 2015

This week, at Support for Special Needs:

Excerpt: 

Nobody I know loves Christmas as much as Schuyler. This might seem surprising, given her own oft-expressed atheism. (Believers who are worried about her soul's peril might be slightly relieved to hear that she recently expressed some wiggle room on the question of the existence of God.) But Schuyler loves the music of the season, and the gift-giving (and the gift-getting, because she's no fool), and the general positivity of the season. Schuyler Noelle, who has as much reason to believe otherwise as anyone, has a seemingly bottomless faith in the goodness of people. She's better at being a human than just about anyone I know.

To Schuyler, at Fifteen

It's funny, I've always written with the idea that one day, Schuyler would be old enough to understand the things I've expressed. It was a driving force behind my book, the thought that one day, she'd be able to read those pages and see what we experienced in her earliest days, and how flawed I was but how very much I loved her, even when I made mistakes. The same has gone for the online writing I've done over the years.

But now, as she turns fifteen, suddenly I'm writing less for the Schuyler of the future and more for the Schuyler who exists now. She's a young woman now, taller than her mother, passing all her classes in her first semester of high school, old enough to watch television and movies that don't make me want to self-injure. Schuyler has even been reading Schuyler's Monster in her iPad. (Her review? "It's pretty good." I'll take that.)

So this is for you, Schuyler. I remember the day you were born like it was yesterday. I remember your squishy little face and how it would turn bright red when you cried, like a tomato. The years between that cold Michigan day in 1999 and today have passed more quickly than seems possible. And yet, I can barely remember what the world was like before you were born. When I think back to the big events of my life, going all the way back to when I was a teenager myself, I imagine seeing you there watching. I feel now like you were always there, even when you were just waiting to be born.

The thing I need you to know today is that this is my favorite day of the year. I love your birthday more than Christmas and certainly more than my own birthday. On your birthday, I get to celebrate the day when your life began, but really, it was the day when mine started for real, too.

Thank you for making me the happiest and luckiest of fathers.

Some Thoughts on a Very Very Very Bad Idea

This week at Support for Special Needs:

Excerpt: 

When news stories come out detailing the mistreatment of special needs kids, I tend to think that the best thing we can do is shine a light on them, to try to force change through awareness. I'm not always sure that actually works, though; when you turn on the lights, the roaches scatter and run under the fridge, but they don't actually go away. Maybe I'm just helping give the roaches a little exercise.

A Scene, and a Revelation

Today at Support for Special Needs:

Excerpt: 

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.

Then and Now

Today at Support for Special Needs:

Excerpt: 

When I think back to my high school years, there's a significant difference between then and now. It's a difference that matters, and one that I suspect most people my age might appreciate. When I was in high school, I knew a few people with physical disabilities, but absolutely none with developmental disabilities like Schuyler's. To this day, I have no idea where they were even educated. I'm not going to suggest they were hidden away in some evil dungeon somewhere, eating bugs in the dark or whatever. For all I know, they were receiving a fine education, but they were elsewhere. And my own development as a human being suffered as a result.

Thanksgiving 2014

Today at Support for Special Needs:

Excerpt: 

I worry for Schuyler around my birthday more then usual, especially with the grey skies and desaturated colors of fall settling in for the coming months. It's just as well that Thanksgiving arrives at the same time. A day for examining the things for which I should give thanks, followed by a season of celebrating the better impulses of humanity, these might be parachutes in an otherwise rapid loss of emotional altitude. Perhaps I should simply be thankful for Thanksgiving and it's slightly contrived but much needed sense of "Quit your bitching and think of stuff to be thankful for!"

Boundaries, Drawn with a Dull Pencil

Today at Support for Special Needs:

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Failure is how Schuyler learns. She is a remarkably stubborn kid; she fixates on problems, particularly those she perceives as injustices, and doesn't let go of them easily. (According to Julie, this is a case of the apple not falling far from the tree.) It can be frustrating as a parent, and hard to step back when she clearly does need help, but steadfastly does not want it. Schuyler wants to make her way in the world, even as she struggles to understand it now perhaps more than ever before. That world has become so much bigger, and her part in navigating it so much more complex.

Astronaut

Today at Support for Special Needs:

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We spend years preparing our astronaut for her grand mission. Years. Then one day, in the not terribly distant future, we will count down and launch her into the unknown. We'll watch that flame rise into the sky, and eventually its brightness will fade and the rumble of the engines will be too distant to hear, and we'll sit in our mission control, in silence. 

When Schuyler takes flight and soars into the void, she will be alone.

The World I Want

Today at Support for Special Needs:

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Given my heart's desire from a magic genie, I might not wish for Schuyler to be made typical enough to make it in the world. It is entirely possible that I would instead choose a world that had places for Schuyler, a world that found value in her weirdness and the patience to wait to hear what she has to say. If I were wise, perhaps I would recognize that given a choice between these two unattainable wishes, the second might just make for a much more interesting planet.

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.

A Season of Making Sense

Today at Support for Special Needs:

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We like Halloween around here. Part of Schuyler's fondness for the holiday probably stems, as it does for many kids with disabilities both obvious and invisible, from the opportunity to pass, if only superficially and for a short time, as no different from other kids. On most days, Schuyler is hyperaware of her difference, but on Halloween, the world is full of monsters and oddities and weirdos. Whatever she may think of herself on most days, this is the week where she's just one of the creepy crowd.