Showing posts with label the monster. Show all posts
Showing posts with label the monster. Show all posts

June 29, 2015

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.

June 9, 2015

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.

June 1, 2015

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.

April 20, 2015

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.

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

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.)


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 21, 2014

Deflated

Today at Support for Special Needs:
Excerpt: 
Today, I’m tired of the walking. I’m tired of screwing up, and I’m tired of other people treating Schuyler like a cute little pet who might pee on the carpet, rather than a complicated and nuanced human being. My weapon is a rubber sword today, and it feels especially ineffective. I’m just going to sit for a while and see what happens. I wish I had something in my tank, and I’m sure I will tomorrow. But not today. Sorry.

September 8, 2014

The Other Talk

Today at Support for Special Needs:
Excerpt: 
Typical parents fear The Sex Talk. (To be fair, so do we.) Many special needs parents have The Other Talk, too. We don't discuss the topic with others very much, but be assured that we think about it. When we approach the topic with our kids, we do so gently, because in even the most tragic circumstances, Death shouldn't eclipse Life, and the days we get with our kids shouldn't be entirely stained by our anxiety for the days we lose.

August 25, 2014

To the people like her, which is perhaps everyone

Today at Support for Special Needs:
Excerpt: 
When Schuyler looks at the future, she does so with her disability in mind, but not at the front of her thoughts. I envy her that. She's growing up quickly; today is her first day of high school, after all. We're having conversations identical to those happening in other houses around the world, about how it's appropriate for her to be thinking about boys she'd like to date, or girls she'd like to date, for that matter. ("Or both!" she said during our last conversation about dating; she's going to be trouble.) She asks me to teach her how to drive approximately every other day. When she breaks through her social anxiety, she laughs loudly and easily, and flirts without hesitation. Even a few months ago, I had my doubts about how she will navigate high school. She has those doubts, too, but she's working on them. And the thing is, only some of those doubts stem from her disability.

July 21, 2014

Eleven Years

Today at Support for Special Needs:
Excerpt: 
Mostly, though, the last eleven years have given me Schuyler. They've allowed me the time to let go of my selfish expectations of who I thought my daughter was going to be, and they've allowed me to adapt and appreciate and unconditionally love the weird and wonderful girl she is. It's the girl she is despite her condition, and because of it. And I'm the father I am because of the many mistakes I've made and the occasional things I've gotten right. None of us in this family are the people we were then. The past eleven years have been a crucible and a wonder. We all bear scars and the remnants of war paint, and we all shine a little brighter when called upon to do so.

July 7, 2014

Independence Days

Today at Support for Special Needs:
Excerpt: 
Watching Schuyler and her friend navigate their shared space was an eye-opening experience for me. I observed the ways in which they connected, and watched them dance around the ways that they simply couldn't connect. It gave me a sense of what a friendship with a neurotypical kid might look like, as well as why it has been so hard for Schuyler to make those friendships work out for long. I don't always have a very good concept of how far Schuyler really is from the developmental norm of kids her age. It's not something of which I should be so ignorant.

June 9, 2014

Flygirl

Today at Support for Special Needs:
I don't think there's anything wrong with letting your kid dream past their disability. If it involves a small lie, I think it's not much different from the Santa story (SPOILER...) or the "anyone can be president" fib. (Watch Fox News for a few minutes, until your eyes begin to bleed, to see how the exception probably illustrates the rule.) Our kids are learning a great deal during their early years. That learning process involves more than finding alternate paths through the world. Kids like Schuyler are figuring out who they are, and how their disability can shape them even as they reject the idea that it should define who they are.

June 2, 2014

A Simpler Season

Today, at Support for Special Needs:
Many of us with special needs kids make noises of outward exasperation at the onset of summer, and we mean it, too. But at the same time, when pressed, I suspect many would admit that we're relieved, too. The schools will be giving us back our kids. Whether those schools have gotten it mostly right or mostly wrong, when we get our kids back for the summer, we leave a great deal behind. We're done, for the time being, with all the complications of negotiating school policy and modified curriculum and imperfect behavioral plans and all the modification required to make our beloved square pegs fit into those educational round holes.

March 31, 2014

The Long-Abandoned Path

Today at Support for Special Needs:
Returning to New England has given me the opportunity to think back on the last 10 years, and to reconsider all the choices that we’ve made, and the paths that we have chosen. That is a foolish endeavor, I know. But just lately, as we prepare for Schuyler to enter high school next year, we are more aware now than ever that the paths we walked down with her did not necessarily lead to unqualified success. It’s hard not to wonder if we could’ve done better for her, which is of course the question that occupies far too much of my mind as it is.

March 10, 2014

Great Expectations

Today at Support for Special Needs:
I’m writing about what I’m feeling here because I think it might be almost as common among special needs parents as that early grieving process. When we buy into a Way That Things Shall Be, it can be hard to let that Way go. Harder than even we realize, because there are so few narratives on which we may depend, and when they disappear, blown away like morning fog, there’s not much in our reserves to take their place. The Way was important, and the Way didn’t work out.

February 19, 2014

Schuyler's Brain

After Schuyler's most recent visit to her neurologist back in December, we were given a cd with images from her MRI. In what felt like a flashback to 1995, the cd wouldn't open on our Mac, much less the app that displays the images. We picked it up during the holiday break, so I couldn't take it to work and try it there. We'd already received the pertinent information from Schuyler's neurologist anyway, so there wasn't really anything to be learned from seeing the images. By the time the holidays were over, the cd sat on my desk, patiently waiting for me to remember to bring it in to the office with me.

It ended up waiting until this week.

It brought the cd to work with me, along with Schuyler, who had the day off from school. It was President's Day, an important national holiday which she celebrated like a serious citizen by bingeing on unwatchable Disney Channel programs on her iPad and eating all the snacks in the building. As she sat in my office with her iPad, I stepped down the hall and had a friend open the MRI viewing app on her PC.

And there it was, again. Schuyler's brain, ten years older but still looking, you know, brainy. There were two different versions of the scan side by side, one presenting as bright features and high-contrast regions, and the other more subtle, showing the details of her brain, the folds and the blood vessels.

Even at a glance, as I watched the layers go by, I could see the thing that has bedeviled my daughter and shaped her world and her perception of that world since before she was born. Slightly behind her temples, on both sides. It was faintly visible on the more subtle image, but stood out as a white featureless area on the other, in contrast with the rest of her brain.

I texted Schuyler and told her to come to my friend's office. When she walked in and saw what was on the screen, her eyes widened. She knew what it was immediately.

"Do you know what that is?" I asked.

"My brain?" she answered.

"Yep, that's your brain. And what's that?" I asked, pointing to the two bright regions on the sides.

She hesitated, and then said "My little monster?"

Her little monster.

She was both fascinated and a little grossed out by the images, especially as we moved through the scans. ("Look at your eyeballs, Schuyler! Look at your teeth!") She watched for a little longer and then went back to her crappy tv shows, her curiosity satisfied.

I have to be honest. I could look at those images all day. Not for the information they contain; we'd already gotten a rundown of all the news, which wasn't all that much anyway. But exploring the physical reality of Schuyler's brain is to tangibly experience a place that has been the center of our family's universe for the past decade, but in a largely metaphoric way. It's not just Schuyler who sees her brain as a mysterious but cool place where a tiny monster lives and throws chaos into her path now and then. To actually see that place is a little like getting satellite photos of weather patterns in Middle Earth.

It's easy to forget that all the challenge and all the wonder of Schuyler, the parts that are broken and the parts that are inexplicably working anyway and the things that are the perfect center of my life, it's all there, in that little ball of meat and electricity. Just a simple thing, and yet the most complex organic structure in the world. For Schuyler, more complicated even than most.

Schuyler's brain is malformed, and significantly so. It has changed a little, but not in a way that concerns her neurologist. The regions affected by her polymicrogyria remain essentially unchanged since 2003, as they will remain unchanged for the rest of her life. Those parts aren't doing nothing, and much of their impairment seems to have been taken up by other parts of her brain. But how that rewiring happens is a mystery. Schuyler's original doctor admitted that where the brain is concerned, even the most advanced medical giants in his field were not much more knowledgable than ancient village shamans. We know what Schuyler's brain is doing, but we have no idea how.

Schuyler's brain is where her monster lives. That's what she says. She embraced the metaphor from the title of my book, and she took it to heart. She imagines her monster, tiny and bug-eyed and fierce, sitting in its little comfy, overstuffed monster chair, and it watches her. It pushes buttons on its big monster console and creates the fog that impairs her thinking. It presses another button and disengages clarity in her speech. It pulls a lever and conjures earthquakes now and then. She doesn't like her little monster, and on the hard days she comments that it doesn't like her, either. She never says she wants the monster gone, however. She accepted long ago that she and her little monster are going to be engaged in this uneasy, awkward dance for the rest of her life.

Schuyler's brain is where her world is constructed, like a template that sits atop the boring one the rest of us occupy. Her world contains big monsters, too. Some of them consist entirely of shadows that only she can see, with the aid of her special goggles (left over from her Amelia Earhart costume from a few Halloweens back). Her world is one in which lights passing overhead in the night sky might belong to airplanes, but are just as likely to be part of a spacecraft bringing aliens to our midst. It's a world where her father might just be a werewolf, which suggests that as my daughter, she might just have some howling and adventure ahead for her as well. Schuyler isn't delusional; she understands that these are constructs. But even now, she brings her world of play wherever she goes, and the invitation to visit her there always stands, for anyone willing to put on a pair of monster hunting goggles and join her.

Schuyler's brain is a place full of contradictions. In that brain, the people she meets are potential friends, and she constructs those friendships mentally long before she makes them. But that brain has a difficult time building those friendships, and so she stumbles, is socially awkward, because she doesn't quite know how to bridge that gap, the one that her monster excavated and the one that she probably just comes by naturally, too. Schuyler is both boisterous and shy. One day she'll make some forever friends. One day she'll find that forever boy, or forever girl, and when it happens, it'll be because that person will see Schuyler's worth, and so he or she will do the work that comes with communicating and negotiating and working out the mysteries of Schuyler's brain.

When I look at the pictures of Schuyler's brain, I see a universe contained inside a perfect little girl's head. And I see the very center of my own world. It's a puzzle and a perfect vacation spot and a remarkable learning lab and a battleground. When I think about that brain, in all its corporeal mass and its indescribable spiritual vastness, I can only say that I love it, with its imperfections and all its beauty and its immeasurable possibilities. It is in fact my very favorite place in all the world.

February 17, 2014

Diversity in Language

Today at Support for Special Needs:
As parents of children with disabilities, we are constantly looking for the word choices that reflect not just our kids’ reality, but also the dignity and the hope and the possibilities that we hold as a kind of sacred trust.

December 31, 2013

I will try.

At Support for Special Needs:
I’m not sure I’d call any of these "resolutions". But as we march off into 2014, I will try to be the father that Schuyler needs, more now than ever. I wasn’t ready to take on the life’s work of being a special needs father; I’m not sure anyone ever really is. But it is in the trying that I become a better father, and a more whole person.