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

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.

September 9, 2013

Stealth Monsters

Today at Support for Special Needs:
Parents of special needs kids with less visible disabilities spend a lot of time trying to moderate the effects of curiosity and casual observation. We worry that our kids will be judged unfairly by the outward manifestations of their disabilities. When our kids manage to pass unnoticed through the world, we find ourselves admitting, with varying degrees of shame, that we are proud of them for avoiding the judgment and scorn of a cold society. But it's safe to say that we do the same things ourselves. It's different for us, of course. When we identify a kid having a meltdown in public as something besides an entitled brat, we do so with empathy. But we still do it. We still play our own version of "What's going on here, exactly?"

September 2, 2013

Everyone communicates

Today at Support for Special Needs:
It's when we are faced with the subtle, nonverbal communication tools of the disabled that we find ourselves challenged to learn the language of the land, and learn it quickly and without translation to ease the process. How much easier it is to simply declare communication as unattainable, and to place the blame for that failure at the feet of the disabled.
2007: Schuyler's howl of joy upon seeing the Empire State Building for the first time.

August 5, 2013

The Peril of What If

Today at Support for Special Needs:
Sometimes the What If Game cuts both ways. What if our children really could be cured, or helped to the point that their disability is all but defeated? What does that do to their sense of identity? What if it changes the essence of who they really are, in a fundamental way? What would our relationship as parents represent then? What is my responsibility? Is it to protect that basic sense of self, or to fight to open doors that may lead them to places we never dreamed of? Are those places necessarily GOOD places?

August 1, 2013

A Day of Note

There were two notable things about yesterday.

It marked the ten year anniversary of Schuyler's diagnosis for bilateral perisylvian polymicrogyria. It was the day we received all the gloom and despair prognostications for her future.

And yesterday was the last day of her cheer camp, in which she performed with her middle school's eighth grade cheerleading squad, along with hundreds of other girls from other schools. Almost all of them neurotypical, and almost all of them indistinguishable from Schuyler in their demeanor, behavior and performances.

These two notable things have nothing to do with each other.

These two notable things have everything in the world to do with each other.



I can recall everything about that day in 2003. I remember how beautiful the weather was, a perfect Connecticut summer day, and how insulted I felt by this. It would have been entirely appropriate to find dark clouds hanging low over the Yale campus where Schuyler's doctors had just delivered the news to us. The news, and the future.

Schuyler's brain was profoundly malformed, perhaps as much as 75% of it. She would probably never talk, or write. She would most likely be severely mentally retarded (a term that was still kicked around by professionals at that time). She would almost certainly have dangerous seizures, probably beginning in the next few years. She could require a severely restricted diet, possibly even a mostly liquid intake. And her fine motor skills would be severely impaired for the rest of her life.

Schuyler's future was spelled out for us that day, and in the weeks and months to come. In retrospect, I guess we forgot to tell her about all the things she would never do, and all the ways she would be broken.




Cheer camp lasted for three days. The girls, all if them eighth graders, were instructed by whom I can only assume were adult cheerleaders, incredibly enthusiastic and frankly scary young (but not THAT young) men and women in cheer outfits not much different than the ones worn by their students. I wasn't sure what to make of them, and I'm still not, but by golly, they turned those girls (all girls at every school) into cheerleaders.

Eighth grade cheerleading squads in this public school district are inclusive, so anyone can join, and there were a few special needs girls that I noticed. I'm sure there were more like Schuyler whose disabilities were largely invisible.

For her part, Schuyler disappeared into a sea of spirited girls in identical outfits and coordinated routines. The only thing setting her apart were her wristbands, and even those matched her uniform perfectly.

When I sent video of the squad's performance to her godparents, Jim admitted that he couldn't pick her out of the rest of the squad. He noted that this was a very good thing.

And it was.

Schuyler was a cheerleader. She did everything the rest of her squad did, and she did it with poise and charm. No one could hear that her words were muddier than the girls around her. No one could see that she had to try a little harder to learn her routines. Schuyler adjusted her work and her performance to counter the obstacles thrown in her path by what she calls "the little monster in my head". She beat it back for another day. She didn't defeat it -- she'll never defeat it -- but she defanged it.

And she kept a journal...

:) Next year, I am going to be cheerleader. On Monday, I am going to a camp to learn to be a cheerleader. I feel happy and nervous about meeting new people and see my friends.

I want to be a cheerleader because I want to be a leader at the school. Cheerleaders helps out lost kids and taking care of the lost kids.

Day 1: I have fun today. I met good friends and coaches. I learn moves about be a cheerleader and a leader too told me to be the best cheerleader and a good friend too. Tomorrow, I am going to that same school I went today. They were moving too fast for me and my friends too. I am going to practice at home tonight and I am going to be good for tomorrow.

Day 2: Today I had fun with my friends and my coaches too. Let's go Razorbacks, let's go! Hey hey what you saying? R M S! Purple! Silver! White!

Day 3: I had super fun and learn old and awesome moves. My squad performed with the other schools. I feel like a real cheerleader now! Yeah!




Perhaps it's not the fault of doctors and therapists and teachers that they get it so terribly wrong. Maybe it's our fault, as parents, that we ask them questions they can't answer and to look into a future they can't possibly predict.

Professionals don't like to say "I don't know. I couldn't possibly answer that with any reasonable degree of accuracy." And we very much don't like to hear it when they do.

Schuyler's life is very different from what we thought it might be. Her absence seizures and complex partial seizures have been mild and elusive, to the point that both her neurologist and the doctor who diagnosed her feel strongly that even if her seizures were finally captured on an EEG, the meds she might be placed on would be much worse for her than the seizures themselves. For now, her brain is humming along largely as it should. Her developmental disability is a reality for her, but the question remains whether there's a developmental ceiling she might hit, or if she will catch up one day. Schuyler's speech is really the only piece of that original statement of doom that has manifested itself as badly as predicted.

And while it's easy to say that she has a mild form of polymicrogyria, it's not that simple. Her brain is profoundly malformed, more than a great many fellow PMG kids whose challenges are much more severe than her own.

Her brain shouldn't be working like it is. When her diagnosing physician finally saw her in person, he was shocked at her abilities. Her brain shouldn't have been capable of what it was clearly doing. The malformed parts were rerouting, reprogramming, and rewiring.

His message to us was clear. Celebrate this magical superbrain of hers. Push her as hard as you can, and let her find her own limits. But don't trust this miracle, not entirely.

We don't. We can't. For families like ours, miracles are suspect. But every day so far, this broken yet unbreakable brain gives Schuyler the complicated, chaotic but happy life that she's got. We understand how lucky she is. We hope and we hope and we hope for her luck to hold.

In ten years, she's not just fought with a monster. She's negotiated with it, made a kind of pact with it, one that I don't understand but am wildly thankful for all the same.

To that monster, I can only say this. Happy anniversary, you motherfucker. We're still watching you.

July 8, 2013

A Monster's Birthday

Today, over at Support for Special Needs:
It's been a decade since all our unanswered questions and vague fears about our daughter's developmental issues and lack of speech development coalesced into an awkward string of words -- congenital bilateral perisylvian syndrome, later renamed bilateral perisylvian polymicrogyria -- and a list of possible outcomes, all of them daunting. Ten years since our lives became altered by uncertainty and a monster sitting forever in the room, unknowable but omnipresent.
July 2003, shortly after Schuyler's diagnosis

June 14, 2013

Father's Day at the Huffington Post

The very cool folks at the Huffington Post asked me to contribute an essay for Father's Day, so here it is, "What I Know About Fatherhood Now That I Have a Teen With a Disability":
In the midst of all my fretting and errors, Schuyler has quietly persevered, and found her own successes. With time, I've finally started to see how she might make her way through a rough and beautiful world.
And I like to think I've learned a few things, albeit through trial and error and error and error.
Happy Father's Day to all you dads out there, and to all of you who are doing the work of fathers. Our moment in the sun may be fleeting, but maybe you'll get a nice tie out of the deal.

May 23, 2013

She's waiting.

Schuyler's IEP Redux took place yesterday. Her previously unsatisfactory speech and language goals were revisited and the new plan for restoring Schuyler's AAC proficiency was worked out, at least on some level. How did it go? I'm not sure how to answer, honestly. The specific goals we wanted were added with a minimum of resistance, and some really good discussion took place that I think will lead to improvements next year. There's a big thing we're asking for that I don't think we're going to get, and it feels important enough that I really believe that without it, everything else might just fall apart, so I'm advocating hard. But no decisions about this big thing were made yesterday, which I suppose is something not altogether like bad news.

The meeting was going well, and Schuyler was listening attentively to our timeframes and our plans for implementing better AAC standards. She answered questions and understood (and agreed to, more importantly) the things we asked her to consider for next year. It was clear she was thinking a great deal about all this, about how her verbal expression needs to take a backseat to her assistive technology for now, and the kind of communication she needs to focus on in the near future. We've talked about all of this before. Schuyler is facing the future of her own communication, and she's making plans.

It wasn't until she passed us a note during the meeting that I realized all over again how much her plans still include the miraculous.



"How I can talk like my friends?"

Schuyler is looking at the things we're asking her to do, and I think she's going to be willing to do the work required to make those things happen, and to improve her situation.

But she's also waiting. She's waiting for someone to tell her when she'll be able to talk like everyone else. She's waiting for a solution, and a miracle. She's waiting for this to be behind her. Schuyler is waiting, patiently but steadfast, for her monster to leave her alone at long last.

She believes she will talk. And no amount of discussion about her brain's deeply, congenitally flawed architecture is going to divest her of that belief.

It's heartbreaking. We have this discussion every so often, maybe twice a year, and she always accepts the reality of what she's told, but with an unspoken caveat.

"I'll accept that. For now."

And the worst part is, I get it, because I don't allow myself to completely let go of this most improbable of dreams, either. I overbelieve, and sometimes that means keeping the door slightly ajar, like accommodating the return of a runaway cat that's been missing for months, or even years. I do my overbelieving quietly, because expressing it out loud doesn't do anyone any good.

Schuyler waits for something that will almost certainly never come. Even knowing the reality of her condition, I can't express that without including the "almost". She waits, and she never gives up on this hurtful dream. Knowing that it hurts her, I still can't bring myself to tell her that it can never happen, because I owe her the truth, even if it's just MY truth. And my truth hasn't given up hope, either.

This summer will mark a decade since Schuyler's polymicrogyria diagnosis. She's been waiting for someone to help her, to cure her, to fix what's broken, for ten years now. It breaks my heart that she's still waiting hopefully. It also hold my heart together a little to quietly and secretly hold onto a few strings of that hope with her.

We're fools, the both of us. I can live with that.

May 20, 2013

The Things That Matter

Today at Support for Special Needs:
It's easy to get lost in the world in which we live. It's so easy to forget how quickly things can change. It's not hard to miss how what seems like a quirk of development, an unusual manifestation of the architecture of a child's brain, can turn into epic loss with one unfortunate firing of electricity. The world we live in can feel comfortable, even when it's grey. We think about a future that might have color, but we sometimes allow ourselves to forget, for hours or days at a time, that the future could also contain bitter darkness, and that today's manageable monster may grow fierce and hungry in an instant.