Showing posts with label schuyler. Show all posts
Showing posts with label schuyler. Show all posts

March 16, 2015

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.

March 2, 2015

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.

February 23, 2015

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.

February 16, 2015

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.

February 9, 2015

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

February 3, 2015

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.

January 26, 2015

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.

January 19, 2015

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.

January 12, 2015

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.)


January 6, 2015

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.

December 29, 2014

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!

December 22, 2014

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.

December 21, 2014

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.

December 8, 2014

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.

December 1, 2014

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.

November 24, 2014

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!"

November 17, 2014

Boundaries, Drawn with a Dull Pencil

Today at Support for Special Needs:
Excerpt: 
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.

November 10, 2014

Astronaut

Today at Support for Special Needs:
Excerpt: 
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.

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 27, 2014

A Season of Making Sense

Today at Support for Special Needs:
Excerpt: 
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.