A Musical Interlude

To help make up for the sad, gloomy Grim Reapy nature of that last post, here's a little something that Schuyler and I did tonight while practicing her marimba music for her next concert. I asked her if she wanted to share any of it with all of you, and we went through all the clips we shot and found the two she liked the most:





And then we started to have some fun, and ended up with this unedited and unrehearsed forty seconds, which is now just about my favorite thing we have ever committed to video.

Ladies and gentlemen, The Awesome Song:

The Big Bad

It's Monday, which must mean 1) your weekend is over, sorry, and 2) I have a new post up at Support for Special Needs.

This one is a little dark, although it's also one that I'm slightly more proud of than usual. It deals with a subject that a particular, often forgotten about subset of special needs parents don't usually like to talk about but which never leaves our minds entirely: the possibility of our child's disability proving to be fatal.

It's something that has been on my mind a lot lately, mostly because of Schuyler's increasing seizure activity and that recent story about a kid Schuyler's age who died as a result of his own polymicrogria. I thought it was time for a reminder, perhaps mostly to myself, that among all the things we advocate for, significant and petty alike, some are beyond our reach.

Major league bummer, I know. Here's a picture of Schuyler's cute little piggy (buckled up in the car because, you know, safety first), just to cheer you up. (Schuyler is into these big-eyed animals now, and I have to admit that whoever came up with them is a genius. I never had a toy make me feel guilty for NOT buying it before. I know, I have Issues.)

A Different Drummer

Earlier this week, Schuyler and I went down to San Antonio to see our dear friends Jim and Kim, Schuyler's godparents. (Or whatever we agnostic heathens are supposed to call the folks who will take up the feeding and watering of our kid if Julie and I murder each other or get eaten by a sasquatch one day.) I was going in order to work with Jim's trombone class, and Schuyler was along for the ride. She got to see two of her favorite people in the world, and she got to miss two days of school, so it was a solid win for her. It was also an opportunity for Schuyler to get in a percussion lesson with a member of Jim's talented staff, sneaking in some actual learning amongst all the fun truancy.

Schuyler has to work hard in band, but she's staying on top of it. Her band director here in Plano continues to be fantastic. She strikes the perfect balance between accommodating Schuyler enough to keep things realistic for her and at the same time challenging her with a meaningful band experience. I've already shared Schuyler's previous concert experience, with her kind and only slightly narcissistic permission. (I know, she comes by it honestly.) Her next performance is coming up next week, and she will again be playing a multitude of instruments, including crash cymbals, the bass drum (her favorite, by a long shot) and the marimba. That last one is still quite challenging for her, requiring as it does for her to read music, a skill that she's working on and slowly improving upon. Her band director spent some of her no doubt valuable time rewriting a very difficult part for Schuyler to make it more manageable, but it's still hard enough to require a good amount of work. The challenge frustrates Schuyler, but it is also very good for her.

Schuyler spent most of the day in San Antonio observing the bands, including watching her father play, which I believe surprised her; I think in her eyes, I was like Atticus Finch shooting the rabid dog in the street. More importantly for her, Schuyler watched the other kids. They were mostly older than her, but only by a few years, and the music they were playing was harder but not drastically so. She saw how they worked together, and how they helped each other. In short, she saw how they behaved as a community, as friends working together to create something special while having fun doing so. (Disability community, take note.)

When Schuyler took her lesson, I took a few photos and then hid in the back for most of it. I eventually left the room so I wouldn't be "that parent", although honestly, I should have left them alone the whole time. (Well, what are you gonna do?) What I saw when they began was what I've observed countless times before. There was a bit of initial confusion on the part of her new teacher on how exactly to approach Schuyler, but then subtle adjustments as Schuyler showed him how she could focus and work.

Schuyler is good about teaching her teachers how to teach her, if that makes any sense. In circumstances like this, Schuyler's disability comes to the front, but she's also very quick to show that it doesn't get to call the shots. Teaching Schuyler isn't like teaching anyone else, and the good teachers recognize this but don't let it scare them off or cause them to give up on her. This was one of the good ones. She's been fortunate this year in that most of her teachers have been willing to do the work to break into Schuyler's world.

Schuyler presents as neurotypical most of the time, but only on the surface and rarely for long. Her differentness can take people by surprise, and I confess that I judge those people, often unfairly, by how they respond to that surprise. But as she embraces her new role as a percussionist in her school band, I see for Schuyler a path forward, and a way to make her way in the world on terms that are very much of her own making.

Everyone claims to value the act of marching to the beat of a different drummer, which suggests a need for that different drummer. Schuyler's got you covered.

Voices of Change

I've written a new post for Support for Special Needs, this time on the changing nature of how Schuyler uses AAC technology. Don't worry, it's not very technical at all. You can be assured that a blog post isn't going to get too far into the weeds when it includes the words "farting monkey". You're welcome.

Quality

This week at Support for Special Needs, I've written about the awful story of the Children's Hospital of Philadelphia's shameful treatment of a little girl with a developmental disability in need of a kidney transplant. If you haven't read about it, I hope you had a nice weekend offline. Because, seriously, it has generated more outrage and action online than I have seen in a long time. And rightly so.

Exciting News: Look for me at Support for Special Needs weekly now. (Or weakly, if you don't care for my writing. You know who you are.)

Storm-toss'd

It was a rough weekend for Schuyler. The monster that has been plaguing her lately was as hungry as ever. More complex partial seizures, more storms in her head, leaving her exhausted, sad, confused.

The worst of them hit her in a toy store, sapping her energy and her interest. One minute we were wandering the aisles of Toys-R-Us, dueling with Nerf swords and contemplating the purchase of a very cool dinosaur to add to her collection. The next, she stood in place as if she had no idea how she got there, face flush and eyes blank. We went next door to a pet store, and there was a group there adopting out puppies. There were puppies to play with, but not for her, not this time.

"Can we go home?" she asked quietly.

Later, as we drove to pick up Julie from work, Schuyler and I discussed her seizures. I explained again what was happening, and what we were might do to bring them under control.

"We're going to figure out how to make your brain stop getting mad at you," I told her. "We're going to try our very, very best to make things better, I promise."

She thought this over and nodded. She wasn't sad, exactly. More like... resigned. Without looking at me, she pointed to her throat.

"I want to talk like everyone else," she said.

I'm not sure what it says about me as a parent or a person, but all I could say to her was, "I know, sweetheart. I know. And I'm sorry I can't give that to you."

It says everything about Schuyler that she seemed entirely satisfied with that response.

Of monsters and mousetraps: 2012

I have a new post up at Support for Special Needs, about the coming of the new year and what it can mean for parents of kids with special needs. I'm looking forward to continuing my association with Support for Special Needs; the site is a fantastic resource and safe place for advocates and caregivers, and I'm honored to have the opportunity to contribute to their work in my own small way.

Oh, and Happy New Year, everyone. Good timing, too; I was all set with 2011.

MonsterGram

Sometimes we allow ourselves to forget.

Sometimes the monster sends a friendly reminder.

Friday was a rough day for Schuyler. Not one but two seizures, we believe, and the second one actually left her in tears. The confusion, the disorientation, the light-headedness, they upset her. She's aware of when something isn't right with her broken brain. Well, of course she is.

(Note: Before I go any further, there's something I probably haven't made clear. I know it seems like I share everything here, but the fact is that I don't, not by a long shot. I think that's appropriate.

But when I talk about the confusion and anxiety that we feel about Schuyler's seizures, I might be giving the impression that we are just sitting here on our hands, muttering "What the fuck?" and crying ourselves to sleep. I've gotten a few emails suggesting that we're not doing enough, or even anything at all, for Schuyler, based on that erroneous assumption. Please, don't be that person.)

We've been trying to catch one of them on video, but it's tricky. Search for "complex partial seizure" on YouTube and you'll see why they are easy to miss. Schuyler's seizures are mostly become apparent by their after-effects, the moodiness and the confusion. Sometimes she tells us that she is dizzy, which seems to happen right before a seizure, but mostly she simple tells us sadly after. "My brain is mad at me."

So we didn't catch them on Friday. One occurred as she was waking up, we think, and the other in the car as we went to a movie. We tried to give her a happy afternoon, however, and by the time we engaged in some strict "cheeseburger & milkshake" therapy, she was mostly over it, aside from being tired.

We were all over it, I think, until I got a Google alert email on my phone. I have one set up for "polymicrogyria", just in case some new bit of helpful research is posted online. But that's not usually what it catches. And it wasn't this time, either.

From The Toronto Star:

“A beautiful, angelic child, full of grace and patience,” writes Anthony Moyson of his son, Isaac Dylan, who died in February of a rare brain disease called Polymicrogyria, aged 13.

Polymicrogyria. Thirteen.

It's easy to forget. It's easy to pretend that the only obstacles in Schuyler's path involve school or the politics of the playground or her murky, unsettled future of trying to make it in the world independently. It's easy to pretend that incivility or social injustice could be the only things that could keep her down. It's easy to lose sleep over the question of what will happen to Schuyler when we are gone, but not over the very very horrible alternative.

I like to believe that Schuyler's monster now has blunted teeth and clipped claws. I think it probably does, mostly. But as her maybe-seizures get maybe-worse, we are reminded of the impermanence of health and the persistence of monsters.

This time of year, sleepless nights seem especially cold and dark.

"Dear Santa..."

Christmas Eve, 2011

Christmas Eve, 2011

I usually write a Christmas Eve post that is mostly about my own faith, such as it is. I'll certainly link to and quote from one I like, from 2008, which says it pretty well already:

I guess on Christmas Eve of all days, I permit myself to believe that perhaps Schuyler's strange words aren't necessarily broken, but from some other world that I'll never be able to visit but which, through her, I get to glimpse.

In 1 Corinthians, St. Paul describes the tongues of angels, unintelligible to us. Maybe, just maybe, this is what he meant. On today of all days, even in my deeply held agnosticism, I'm like Thomas Hardy in his poem "The Oxen". I'm not inclined to believe in miracles, but that doesn't mean I don't pay attention to the things around me, like Schuyler, that sometimes seem miraculous.

I don't necessarily believe, but sometimes I hope, and that might just be enough.

There's a poem that I like to quote, one that speaks of an agnostic's dilemma at Christmas, and how he doesn't have faith, but sometimes wishes he did.

I love that poem. I'll probably quote it at the end here, too.

Today, however, my thoughts are of Schuyler, and what she calls "the little monster in my head". There are two reasons for this. The first is that as we continue to observe Schuyler and read more about what might be happening to her, we start to figure things out. We're tracking the probable relationship between her menstrual cycle and the onset of seizures, for example.

And we believe we have a better idea of what they are. Not the absence seizures that we originally thought, at least not now. As they become more pronounced, and especially since we observed one of them first-hand recently, we believe that she is having partial complex seizures.

From the epilepsy.com site:

How long do they last?

They usually last between 30 seconds and 2 minutes. Afterward, the person may be tired or confused for about 15 minutes and may not be fully normal for hours.

Tell me more

These seizures usually start in a small area of the temporal lobe or frontal lobe of the brain. They quickly involve other areas of the brain that affect alertness and awareness. So even though the person's eyes are open and they may make movements that seem to have a purpose, in reality "nobody's home." If the symptoms are subtle, other people may think the person is just daydreaming.

Some people can have seizures of this kind without realizing that anything has happened. Because the seizure can wipe out memories of events just before or after it, however, memory lapses can be a problem.

Some of these seizures (usually ones beginning in the temporal lobe) start with a simple partial seizure. Also called an aura, this warning seizure often includes an odd feeling in the stomach. Then the person loses awareness and stares blankly. Most people move their mouth, pick at the air or their clothing, or perform other purposeless actions. These movements are called "automatisms" (aw-TOM-ah-TIZ-ums). Less often, people may repeat words or phrases, laugh, scream, or cry. Some people do things during these seizures that can be dangerous or embarrassing, such as walking into traffic or taking their clothes off. These people need to take precautions in advance.

Complex partial seizures starting in the frontal lobe tend to be shorter than the ones from the temporal lobe. The seizures that start in the frontal lobe are also more likely to include automatisms like bicycling movements of the legs or pelvic thrusting.

Some complex partial seizures turn into secondarily generalized seizures.

What else could it be?

Complex partial seizures sometimes resemble daydreaming or absence seizures.

That describes Schuyler's episodes perfectly. Last spring, we observed her making tiny movements with her mouth while she was "out"; the last time a few weeks ago, she simply slouched down in the back seat of the car and opened her mouth. None of this is terribly new information, just a matter of us putting pieces together and making the connections. I'm also not sure if partial complex seizures are any worse than absence seizures. Just a slightly different monster, and perhaps a slightly better understanding.

The other reason I've been thinking about her seizures today is that I'm pretty sure she had one yesterday, while we were at the mall doing the last of our holiday shopping. It would certainly be a good time for one, as far as stimulus goes. The mall isn't the best place to go on Christmas Eve Eve, after all. I felt a little like I was trapped in an episode of The Walking Dead, not running from the zombies but just scooting along with them.

Schuyler alerted me to this one, telling me that she felt dizzy. This is how she's described it in the past. As soon as we could break free of the "Every day I'm shufflin'" crowd, we grabbed something to drink and took a seat. I took out my phone, hoping to catch this one on video, but it had already happened, probably before she said anything to me about it. What I caught instead was a photo of Schuyler's expression, beautiful and sad. She was probably in what I've learned is called the postictal state, in which she's basically rebooting. A little crabby and a lot disoriented. Another parent of a child with seizures wrote to me and said she knew that look.

And like before, after ten or twenty minutes, Schuyler was back to her old self, although a little fatigued.

The thing about yesterday, however, is this: I think that at the end of the day, when she crawled into bed with Jasper and kissed me goodnight, she was happy. We'd mostly had a good day. And I keep coming back to this in my mind, the fact that we've reached a point where she can tell us that a seizure is either coming or has just happened, and we can deal with it and move forward. We adapt, we recognize that there's a monster in the room, and then we readjust our seating and carry on.

This Christmas Eve, I'm as far away as ever from embracing the Christian faith, and now Schuyler is old enough to express that she doesn't buy it, either. I'm sure that's as much about fitting in with her parents as anything else, but it means that she's aware that this choice sets her apart from most of her peers, and she's making it anyway. She's used to being different, and I believe that she's too strong to put her faith in fairy tales.

And yet, on this Christmas Eve like so many others, I find myself looking at the comfort of big-f Faith and envying that comfort, silly though I may find its underpinnings to be. Thomas Hardy understood that, I think.

---

The Oxen 

Christmas Eve, and twelve of the clock,
"Now they are all on their knees",
An elder said as we sat in a flock
By the embers in hearthside ease. 

We pictured the meek mild creatures where
They dwelt in their strawy pen,
Nor did it occur to one of us there
To doubt they were kneeling then. 

So fair a fancy few would weave
In these years! Yet, I feel,
If someone said on Christmas Eve,
"Come; see the oxen kneel 

"In the lonely barton by yonder coomb
Our childhood used to know",
I should go with him in the gloom,
Hoping it might be so. 

-- Thomas Hardy

12

I have spent the last twelve years in a state of grace.

I've known happiness that I can't describe, and I have felt sadness and fear that also feel too big for words.

I've watched a quizzical little baby grow to an ethereal little girl, and I've seen that child grow into a beautiful and tough young lady who walks and lives in this world now, but on her own terms.

It hasn't been easy, and I've not always (or perhaps even mostly) been completely up to the job of being Schuyler's father. I've probably stumbled as often as I've gotten it right. But I wouldn't un-live a moment of it, not even the sad times, nor would I trade places with any human being on the face of the earth. I have lived a charmed and privileged life in these twelve years, and I know now that the thirty-two years that preceded them were nothing but prelude.

Happy birthday, my weird and wondrous monster-slayer.

A Season of Difference

There's a new post at Support for Special Needs for your consideration. It deals with the holidays and how Schuyler's "differentness" may be coloring her own perspective on them. It's about being different, as a little girl with a broken brain and as a family, and how one may inform the other.

Schuyler is growing up; she turns twelve on Wednesday. Sometimes I look at her and see the young woman she is becoming, and my feelings about that are... complicated. As are most things where Schuyler is concerned. Most things, except her love, which is the purest thing in the world.

Fuzzy Jedi

A Ghost of Christmas Past

I unearthed another short video, this time from Christmas of 2002. Schuyler had just turned three. She didn't care much for her presents, but she dug the snow and she loved her mother and father without limits. And her mittens didn't fit. That was Schuyler in the waning days of 2002.

This was the last Christmas we had without the known presence of her monster, and all the heaviness in the air that accompanied that knowledge for so many years. It was also our last real Christmas in New Haven, Connecticut. By this time the next year, we were on our way to Texas.

Nine years, wow. It feels roughly a thousand years ago. Approximately.

As long-time readers will remember, we used to call Schuyler "The Chubbin". You'll see why. It's hard to reconcile that fat, totally wordless little monkey with the tall drink of communicating water we have now.

I sort of wish I could warn that family how much sorrow was waiting for them, and how much joy, too. Mostly the joy.

Well, he did ask...

This might be a story of how, in a moment of truth, I failed to properly advocate for Schuyler, and how it ultimately didn't matter. Or it might just be a cute little anecdote. It may very well be an indication that everything is going to be okay. You decide.

Last night, Schuyler and I were at a favorite semi-fancy grocery store in our neighborhood, looking for a birthday cake for Julie. (I know, a day late. Don't judge.) We don't go there all the time, on account of that whole "not made of money" thing, but it's a nice place with an interesting clientele. A few weeks ago, I found myself standing next to one of my favorite actors from one of my favorite tv shows, for example. (Idea for a new show: Looking at Beans with Buddy!)

There's a slight snoot factor with some of the shoppers, but the people who work there are super nice, and the store hires a lot of persons with disabilities and doesn't hesitate to present them up front as the face of the store. That matters to me, a lot.

When Schuyler and I shop, we have fun. She's still young enough and... odd enough to find adventure at the grocery store, and really, so am I. (Well, not so much with the young, but certainly the odd.) On yesterday's trip, we stumbled across a display of very cool holiday hats, and we were trying them on and being goofy when a gentleman stopped and watched us for a moment. I was posing for Schuyler and she was laughing and jabbering happily. As she does.

The man waited until he caught my eye. "Is there something wrong with her?" he asked.

He didn't say it rudely, and I suppose he might have even thought he was simply being curious. But he said it, and he said it right in front of her, as if she wasn't there, or more to the point, as if she wasn't capable of understanding what he said. An assumption, far too common, made based on the fact that she didn't communicate in a way that he understood.

I would like to be able to say that I responded with patience and took advantage of this teachable moment to educate him on Schuyler's disability and his own need for empathy. And really, I wouldn't mind reporting that I instead came back with some clever zinger that put him in his place, either.

But honestly? I did neither. I stood there for a moment, dumbfounded. I dropped the ball.

The ball did not stay dropped for long, though. Schuyler scrunched up her face, pointed to the man and gave him a thumbs down.

My hero.

The end of the story is a little anti-climactic. When I saw Schuyler, I broke up laughing, and due to my persistent holiday cold, that laughter led to a coughing fit. I couldn't stop, and that cracked up Schuyler, who then started laughing her goony little laugh. So basically, we answered him with laughter and coughing. The man just sort of walked away while I bent over coughing and Schuyler pounded on my back, still laughing.

I guess we answered his question. "Yes, she speaks Martian and I have tuberculosis. Happy holidays."

So there you go. Self-advocacy at its most concise. I like to think we're raising her right.

Welcome to the Club

Right on schedule, my every-other-Monday post at Support for Special Needs is up. Go read my current thoughts on community within the world of disability, at least from this parent's perspective. My feelings have changed a bit over the years. Well, it happens.

By the way, Schuyler just walked over to my desk and gave me a message for everyone who said such nice things about her percussion performance video. She said, and I quote, "Thank you for watching." So there you go.

2003, the day after Schuyler's diagnosis

A Good Day, with an Asterisk

Yesterday, Schuyler had a very good day.

Mostly.

After a semester of hard work, Schuyler's beginning band class held an in-school recital; in her case, the beginner horns and percussion. Schuyler has been excited but anxious about this performance. I'm not sure she's completely accepted that she was really going to be able to be a member of something like a band program. She's been a little hesitant, as if someone was going to take this away from her. Being able to participate completely and meaningfully in an actual performance was exactly the thing to convince her that this is all for real, and hers if she wants it.

So it was a big deal, this performance.

Still, when I walked into the school, I wasn't expecting to see two of our very best friends, Schuyler's godparents, waiting inside. I actually did an old movie-style double-take when I saw them. Their attendance was no small thing; they live about six hours away, after all. Jim and Kim have been huge supporters of Schuyler's all along. Jim is an old friend from high school who is now an exceptionally talented band director; his wife directs the color guard at their school, the girls whom Schuyler still refers to as her "sisters". When they learned that Schuyler had a rough week with at least one seizure and probably more, and knowing how important this first performance was to her, they simply piled into their car and drove to Dallas.

Just like that.

Schuyler loves Jim and Kim without hesitation or limits. When she saw them, she waved and smiled a smile that was pretty much in evidence throughout the performance. She ended up doing very well on the recital, and loved every minute of it.

Don't believe me? See for yourself:



After the performance, we scarfed up some free cookies and spent some time visiting with to Schuyler's band director. She's an overbeliever; we like her very much. Afterwards we killed some time until Julie got off work and then headed out for dinner.

It was then, in the car, that Schuyler began to unravel.

Julie noticed it first. Schuyler was trying to tell her something, but her speech was suddenly very hard to understand, almost like a baby babbling. As we parked the car, I turned and saw Schuyler leaning lethargically against the door, her eyes distant and her mouth open slightly. I said her name a few times, and she snapped back. She was irritable and disoriented for maybe a minute and remained a little quiet and distant at dinner.

She came back to us, though. For the most part.

We were all a little shaken, as this was the closest any of us had really come to actually witnessing one of Schuyler's absence seizures. But we took our cues from Schuyler, who seemed determined to have a fun evening despite her lingering disorientation and fatigue.

Schuyler had a good day, mostly. At its conclusion, she decided that it should be a good day to the very end, monster or no. We're okay with that decision.

Thankful

Thanksgiving can be sort of tricky for special needs parents sometimes. Christmas is perhaps a little easier, I think, only because virtues like compassion and acceptance are usually in abundance during the Holidays (the sinister War on Christmas notwithstanding). There's an element of taking stock at Thanksgiving, however, that can be challenging for special needs families most of all. We're not always on board with making lemonade out of those life-handed lemons under the best of circumstances, after all. We'd like to cut those lemons and stick them in someone's eye much of the time, really. Being told "It's Thanksgiving, goddamn it, there's always something to be thankful for, so get thanking, you!" doesn't always sit well.

Thing is, though, it's true. There is always something deserving of gratitude. It can be hard to silently endure the "We're thankful that little Madison was the top scorer on her soccer team!" status updates on our friends' Facebook pages, but we do what we always do. We recalibrate for our own lives and our own worlds. We're not lowering the bar, certainly; I feel pretty certain that Schuyler works every bit as hard and every bit as smartly as little Madison, and gets handed lemons that would crush Madison's mom's minivan like a bug.

Thanksgiving for our families is different from that of the neurotypical family. And perhaps it's exactly the same, too.

Parents of neurotypical kids probably don't express gratitude for their child's ability to speak (some of them very much do not, I suspect), but this year, I am thankful that Schuyler has made such great strides in communication that her garbled but improving verbal speech, her sign language, her AAC device and her Advanced Mime School techniques have allowed her to succeed in her new school beyond our expectations.

I'm thankful that Schuyler's hunger for independence and The New has served her well in middle school. She gets overwhelmed, to be sure, and she screws up frequently. But her teachers seem to understand that making those mistakes is good for her. Schuyler has stumbled a lot, particularly in the past few weeks. She is definitely ready for a little break, I think, and a chance to regain her focus. But there is a lot about middle school that neurotypical kids don't necessarily have to constantly work to master. I think the time will be here soon when Schuyler won't have to work so hard to navigate those obstacles, either. For that, I am preemptively thankful.

I'm thankful that Schuyler's brain seems to be messing with her in small and manageable ways. The maybe-seizures that may or may not have been tormenting her last spring have maybe returned a time or two, maybe maybe maybe. (Stupid inconclusive, ill-timed EEG; we'd love to try again, but our money-tree seems to have developed root rot.) It occurred to us a few weeks ago, when Schuyler maybe had a maybe seizure in our maybe living room, that she may very well be having them regularly, but has simply adjusted to them and compensated for their effects. Maybe. I know many parents for whom seizures are the cause of constant vigilance and anxiety, and I also know parents who have buried the kids that seizures took from them. Of all the things I am thankful for this year, the relatively kittenish qualities of Polly (as Schuyler refers to "the little monster in my head") are probably the most heartfelt.

I'm thankful that Schuyler can self-regulate her diet and is at a low risk for choking now. I'm not sure how many parents are thankful that their neurotypical kids can eat, but I am. I'm thankful that Schuyler has incorporated punky cool wristbands into her fashion style so that she can discreetly deal with her occasional drooling. I'm thankful that she is finding her way to navigate through the world. I resent the fact that the world has so little space for kids who are different, kids like Schuyler, but she doesn't seem to share that resentment. She simply adjusts, without shame but instead with a matter-of-factness that seems to minimize her difference by owning it with as little drama as possible.

I'm thankful for Schuyler's independence, and for her positive attitude as she makes her way in the world. That's no small thing. No one can predict what kind of adult Schuyler will be, but I don't think she's on a pathway to bitterness and resentment. She's always behaved as something of a self-appointed ambassador between her special ed classmates and the neurotypical kids in her mainstream classes. Schuyler turns twelve next month, which I think is probably old enough to start considering a lot of her personality traits to be hard-wired. I see in Schuyler the beginnings of a community builder, a positive force for whatever she chooses. I'm thankful for the young lady she's growing into.

I'm thankful for the friends who have been so supportive of Schuyler, particularly the two who will take over her feeding and watering and occasional hosing down in the unlikely event that Julie and I should perish together. (Or murder each other; don't rule that out.) Ask any special needs parent what keeps them up at night, and they might very well answer "What would become of my kid if something happened to me?" Having the beginnings of a plan in place represents a great deal of peace of mind for us. I'm also thankful to have a good job with a big-hearted boss and the flexibility to take care of Schuyler when I need to. That's also an amazing thing to be able to say. I'm grateful to everyone who has kept Schuyler in their hearts and yes, their prayers, over the years.

Finally, in a weird way, I am also ever-so-slightly thankful for Schuyler's monster. It's a motherfucker, to be sure, but it has put some obstacles in her way, and in ours, which have made us all better people in the overcoming. It has helped to make Schuyler who she is, although as I watch how hard she works against it, I would still take it away from her in an instant. I can guarantee that we pay closer attention to Schuyler when she's trying to tell us something than most parents of neurotypical kids, out of necessity, but a funny thing happens as a result. In watching Schuyler closely and in listening for her inflection, we are rewarded with an intense intimacy in our interaction. In waiting for her to form more complicated thoughts on her AAC device, we develop a kind of patience that I can't imagine is paralleled in neurotypical parenting. As a young child, Schuyler's internal world was a place that was mostly inscrutable to us. The older she gets and the more clearly she communicates, the more we get to explore that weird and wonderful world of hers.

Some of her walls have transformed, through her hard and often frustrating work, into windows. A few of them have even become doors. And for that, I am truly and unshakably thankful.

The Things Unseen

There's a new piece called "The Things Unseen" over at Support for Special Needs.

Everyone have a nice Thanksgiving this week, if you're an American, and a swell Thursday if you're not (or if you're a thankless grouch, I suppose). I will be turning forty-four on Saturday, assuming I don't have a very, very bad week.

Ha ha! I'm old.

Dinner and a monster movie