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

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.

December 18, 2013

My All, at Fourteen

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

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

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

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

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

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

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

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

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

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

So. That's cheerleading.

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

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

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

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

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

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

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

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

December 9, 2013

The Hardest Forgiveness

Today at Support for Special Needs:
As parents, we’re probably almost certainly unprepared for the disabilities of our children, at least at first. We go into battle against monsters without so much as a BB gun in our hands. What we discover as we go is that sometimes, we don’t need weapons. We simply need different tools, such as patience, and tougher skins, and ingenuity. And most of all, we need to learn forgiveness, primarily for ourselves.

November 25, 2013

The Brain Pill

Today at Support for Special Needs
I don't know what I was expecting, but Schuyler's brain, by virtue of its remarkable rewired structure, is a huge unknown to us all. And the potential side effects of this med spelled out on the info sheet were daunting; I half expected to see "werewolfism" listed.

November 22, 2013

Storm Warning

We've embarked down another path with Schuyler. It's not a path we were hoping to ever step foot upon, but then, we were perhaps entertaining unreasonably high hopes.

We received a call from the school yesterday morning, letting us know that Schuyler was in the nurse's office, complaining about a bad headache. When I went to pick her up, the nurse filled in some of the details, including the fact that Schuyler was saying and doing things that didn't actually make a lot of sense. Schuyler seemed tired and a little disoriented when I saw her, and after we got home, she remained... not herself. She complained about a headache for a while, localized on the right side. By three o'clock, she was fine, but even as the afternoon and early evening wore on, she was clearly exhausted. She went to bed early without protest.

So, yeah. Schuyler had a seizure at school. The usual indicators were there, laid out like familiar road signs.

This one seemed worse than before, however, and it manifested itself differently. I made a call to her neurologist, and when he heard the details, he asked that she be brought in immediately. His urgency got our attention.

The short version is that this new manifestation of Schuyler's seizures convinced her doctor that it was time to put Schuyler on seizure medications. Before, he didn't believe that they were serious enough to justify the issues that come with these meds, which are not usually very gentle on the brain. But now, he's concerned that stronger seizures could cause her brain, in its malformed state, to become "kindle" for the harder grand mal seizures that everyone is deeply committed to avoiding if at all possible.

One of the reasons I like this neurologist is that when he talks ABOUT Schuyler, he talks TO Schuyler. He asks her questions directly, only turning to me when she's having trouble expressing herself, and when he's got hard stuff to say, he doesn't sugarcoat it for her. The conversation, some of it dark, about what could happen if her seizures progress, and about what these meds could do to her, was had with Schuyler first and foremost. I like that. She deserves that.

As we talked on the way home, Schuyler suddenly made the connection between the bad and potentially dangerous grand mal seizures we're all trying to ward off and the heartbreaking seizure she witnessed this summer when one of her friends in Miracle League soccer was suddenly stricken in the middle of the field and had to be taken away, still unconscious, in an ambulance. This thought scared the shit out of her, and I don't remember the last time I saw that kind of fear in her eyes, or watched her cry like that. It was hard to watch, but at the same time, she deserved the truth, and the opportunity to take some level of ownership over this thing. She's scared, but she's taking it seriously, in a way that perhaps she hadn't before.

Meds will be good for her. Now that her seizures have reached this level, her brain will benefit from a little control, and will be able to heal and develop without having to fight so much. The risk/benefit balance has shifted, as we always suspected it would.

As we talked it all out in the car on the way home, Schuyler tried to put herself back together. I knew she was looking for answers to questions that she didn't even know how to ask. Big, scary boo questions.

"Look at me, Schuyler," I said. "Everything is going to be okay. I'm not going to let anything bad happen to you. I promise."

Well, I realize I shouldn't have promised her any such thing. Of course I know that. But I've made much bigger mistakes in than making such a promise to her. And I truly meant it in the moment. Hours later, after much contemplation, I still do.

November 11, 2013

A Little Space

This morning, over at Support for Special Needs:
If Schuyler feels comfortable with even a few people in a gathering, she's a social butterfly, and an explosion of personality. But it's different when she's on her own, with no supports and no comfortable narrative to follow. For Schuyler, with communication being as fragile as it is for her, her social anxieties can feed on her in ways I probably can't imagine. She's not on the autism spectrum, nor am I to my knowledge, but in those settings, surrounded by people she doesn't really know but who come at her with a startling familiarity, a kind of sensory overload shuts her down.


October 21, 2013

Monster Love

Today at Support for Special Needs:
I'm sure there are a great many reasons that Schuyler loves monsters so steadfastly. Monsters are outcasts, but they aren't powerless, even when they lose. Monsters are different, in ways that are usually instantly clear. Monsters make great friends, especially if the world feels overwhelming, or unfriendly, or even dangerous. Monsters sometimes want more than to eat your city. Sometimes they want love, or at least a place in the world all their own. All of the above, and probably more. I don't think Schuyler could even tell you why she loves them so much.

September 30, 2013

Complacency

Today at Support for Special Needs:
I can remember back when it felt like we'd never be able to forget, even for a moment, what hung over her head. But time passes, Schuyler grows and becomes more adept at moving through this world, and so her reality is less front and center. Her brain is so creative and effective in its rewiring and rerouting that it's easy to forget how profoundly malformed it is, anywhere from sixty to seventy-five percent of it affected by her polymicrogyria. It's easy to fall into a place where we simply assume that this brain, broken and clouded but working with startling effectiveness, will always function with such inexplicable success. Schuyler's brain hasn't failed her yet. It hasn't experienced the kind of seizures that her doctors expected, none of the grand mal variety that were supposed to lay her low years ago. It's very easy, at least subconsciously, to confuse her current fortune with a guarantee.