December 24, 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 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

December 21, 2011


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.

December 19, 2011

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.

December 13, 2011

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.

December 10, 2011

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.

December 5, 2011

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

December 3, 2011

A Good Day, with an Asterisk

Yesterday, Schuyler had a very good day.


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.

November 23, 2011


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.

November 21, 2011

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.

November 10, 2011

Season of Gratitude

Much of the life of a special needs parent involves anticipating the worst case scenarios and avoiding them if possible. It never stops, and it never should. If I want to enjoy the unique privilege of being Schuyler's father and friend, the price I pay is never-ending monster watch, a constant vigilance against this grand rough world and its many harms. And really, even at its worst, that price is a bargain.

But sometimes, our vigilance can stand in the way of seeing the things that are in fact going well, going better than expected. I see a number of friends online taking the month of November to give thanks for the good things in their lives. Now personally, I've reserved November for growing a frightening critter on my face and turning an age that might be described as "thirty-fourteen", but I will take this opportunity to express my gratitude, and my relief, for one very important item.

In some very significant ways, Schuyler is thriving at her new school. And her teachers believe in her.

We had the opportunity to drop in at the end of the school day yesterday, in order to pick up the band fundraiser pizza kits we ordered. (Cheese pizzas were a little iffy, but the cheesy bread? I am powerless.) When we walked in, the school was a swirling mass of preteen chaos. I felt a little like Richard Dreyfuss at the end of Close Encounters. And when we found Schuyler, things at first glance were not very encouraging.

We walking down the hall and looked for her near her locker. We only found her after the kids thinned out a bit, for the simple reason that Schuyler was sitting on the floor, her belongings spread out around her as she loaded them into her backpack. For a moment I thought that she had been knocked down Chumbawamba-style, her books scattered by some bully, but when she looked up and saw us, she greeted us cheerfully.

Turns out that's how she does it every day. And for some reason, no one in the crazy busy hallway seems to mind. They just work around her.

As we walked down the halls, I could see once again that as I mentioned elsewhere, Schuyler mostly stands apart from her neurotypical classmates. But what I saw clearly yesterday was that although she's not entirely or even mostly part of their world, they are very much a part of hers.

Schuyler walks down the hall like Mayor McCheese. Every few feet, a student or a teacher says hi to her. One tall girl who had to be two grades older greeted her unhesitatingly with a big hug. Schuyler isn't deeply involved in the social fabric of her classmates, and perhaps it was a silly dream to hope otherwise. But I don't think she's being bullied, and I don't think she's being ignored. If she remains something of an enigma to her classmates, she's an intriguing one, and a mystery worth exploring.

Talking to a few of Schuyler's teachers gave us more information. Schuyler participates enthusiastically and with increasing accuracy, and she gets help from her classmates. As her confidence grows, so does the quality of her participation. Her band director is especially excited about Schuyler's work. We were all ready for Schuyler to require a great deal of modification in her band class, and there's been some. But not as much as any of us anticipated. She's playing independently on the marimba in particular, and yesterday was playing her part by herself in a group. Jolly Old St. Nick, she's got your number.

The thing that more than one teacher expressed that surprised me a little was how rarely Schuyler uses her speech device at school. Not because she's a rotten kid or isn't being supported or feels self-conscious about using it.

She doesn't use it because people understand her.

I've never given up hope, perhaps foolishly, that Schuyler might one day speak intelligibly, and I should be clear. She isn't, not yet, anyway. But the verbal speech that she has and the inflection that she's mastered, along with her signs and her writing, these have given her enough communication ability that she can make herself understood under her own power much of the time.

Schuyler's adapting to her new school environment, but I'll be damned if the school isn't adapting right back.

We've learned not to take this kind of thing for granted, and there's at least one teacher who might not be on board as much as the others. And we've certainly seen a good school situation go sour, so we're not inclined to let it surprise us again. But what we're seeing with her middle school teachers is incredibly encouraging. I feel like Schuyler is on track, and it's been a while since I really felt that was true.

After we talked to Schuyler's teachers, we discussed what was happening, and why things are different now. This school district is one of the best in the state, and Schuyler moved up from one excellent school to another. What's different now? It's an important question. Here are a few thoughts.

Schuyler loves change, and middle school was a huge one. Many special needs kids thrive on routine; Schuyler is almost the opposite. She still needs a lot of structure, but it's a little like eating her vegetables. She's energized by new faces and new places, and every day in middle school provides plenty of both. Even when it trips her up (and it does frequently), the chaos also excites her.

Schuyler's new teachers are looking for her possibilities, not her limits. There is very little "I don't think she can do this" talk going on with her teachers. When modifications are needed, they are made, but they are rarely a starting point.

Her band director in particular is working hard to keep Schuyler on par with her fellow percussionists, and the payoff is Schuyler's bursting joy when she finds herself playing just like everyone else. This week, Schuyler was playing one part of an ensemble piece by herself while her classmates played different parts. When she realized that she was the only person playing the second marimba line, AND she was playing it exactly right, Schuyler apparently lost her mind with happiness.

The result of this new confidence is that she's speaking up in band class more, and approaching the director more frequently. And the director was happy to note that she can understand what Schuyler says.

There it is again: People are understanding Schuyler's communication. When I type that out, something stirs in the center of me, like a dream I dare not acknowledge, the idea that Schuyler is making herself understood without her speech device. When she first began using an AAC device, that was very much NOT the case. She was almost completely unintelligible, and the reaction she got from the world was predictable. Schuyler isn't communicating; her value is therefore diminished.

Well, I believe she WAS communicating. But she wasn't being heard. Certainly not by her teachers back in Austin, and probably not by her family either, not entirely. After six years of verbal modeling with her speech device and the language skills that it helped to teach and re-enforce, Schuyler is seen as a person whose speech is hard to understand, perhaps, but there and waiting to be unlocked. It's still hard work, for her and for the world around her, but she's making it happen. Every day, in ways large and small, Schuyler is gradually taking the wheel.

Schuyler's teachers are excited about working with her, and they are learning how to teach her. I think that's the most important factor with her recent success. It's not just that they are good teachers, although they clearly are excellent educators. She's been failed by more than one good teacher in the past, at previous schools. Now, however, I feel like they are searching for Schuyler's potential, not her ceiling.

Most of her teachers have stayed in close contact with us, keeping us informed of her progress and just how that progress is being made, and asking questions when she stumbles. I can feel their pride when they reach her. Schuyler can be a puzzle, and a challenge, and if you think of her that way rather than focusing on what she can't do, then you start to find her pathways to learning. I feel like that's happening now.

Will it last? Schuyler is a lot of work for teachers, and her middle school experience is just beginning. We've certainly watched as a dream situation has soured in the past. But we dare to hope, because that's what we do. And we dare to believe in someone besides Schuyler, and in all the possibilities that her new school seems to be unlocking.

So in this season of gratitude, I am thankful for Schuyler's new teachers, and her new school life, and the new pathways that are opening up for her, even if they still lead off into a foggy future.

November 7, 2011


Once again, I've written a piece, this one called "Invisible", for the fine people over at Support for Special Needs. And the good news, at least for me, is that it looks like I'll be a regular contributor over there. Here's hoping it's good news for them as well.

(Also, don't forget that November is "cultivating an ugly plot of facial hair to help fight Cancers of the Man Parts" month. Go visit my Movember page to learn more.)

October 25, 2011


Schuyler's monster stirs at times, like Schuyler herself in the middle of the night. We wait, and we watch, and we hope. We don't pray, because that's not who we are, but our hope feels a little like prayer. "Not yet," we ask the Universe. "Give her some more time to just be a kid."

In the midst of her busy middle school life, Schuyler is pestered by her monster. We think she may have had a seizure at school last week. And she had another choking incident recently, a rare event that probably only repeats itself at all because of her complacency, and ours. I can remember choking incidents from when she was much younger, and how upset we all became. Now when they happen, we keep our emotions in check, Julie and I. And Schuyler, too. Irritation, but no tears. She makes adjustments, as do we.

So it goes.

A few nights ago, a storm moved in, all flashing lightning and rolling thunder, and even a little hail. I was the only one still awake, so I went into Schuyler's room to check on her. She was fine, of course; Schuyler has inherited my love of inclement weather. She was awake, quietly watching the storm from bed. I asked her if she was okay, and she asked me to stay. We "oo"'d and "wow"'d for a while; she fell asleep soon after.

It was the first time I'd tried to sleep next to Schuyler in a long time, and certainly the first time since her last EEG. You may remember that the results were inconclusive, but of particular interest was this finding:

Once again, like a happy playground that becomes a scary place full of perverts and drug dealers at night, Schuyler's brain transforms into a different world while she sleeps. On the left side of her brain in particular, she experiences epileptic discharges of a non-seizure variety. They are frequent and big, but brief, lasting about a fifth of a second. They're not causing seizures, although they may lead there in the future. (I read somewhere that people don't have seizures during dream sleep. I don't know if that's true or not, but I kind of like to believe that it is.)

These little Bzzzt!s ARE, however, the likely cause of Schuyler's fitful, twitchy sleep patterns. It sounded like her sleep video must have been exhausting to watch. We knew she was a restless sleeper; she hasn't been able to share a bed with us for many years, as she tosses and fidgets and sprawls out. (Surprisingly, though, she's not a light sleeper. She can still sleep through anything, but that sleep is very active. Weird, I know.) Waking her in the morning is always fun because you never know what kind of "Law & Order" murder victim pose you'll find her in. Now we know why. It's the Brain Pops, as we've started calling them.

Lay next to Schuyler while she sleeps and you'll experience what her sleeping world is like, or at least you'll understand how unquiet that world must be. She moves, not constantly but with a startling regularity. Schuyler doesn't wake up, but I can't imagine her sleep is very restive. She doesn't seem particularly tired the next day, which is probably due in part to the fact that we make sure she gets nine hours of sleep every night. But I can't help but think that her body has adjusted to a life of Brain Pops, of tossing and twitching and kicking. I couldn't last more than about twenty minutes before I had to quietly sneak away. Schuyler never awoke. But she never grew still, either.

Schuyler lives a life of small compromises. She makes dietary choices because she knows that the wrong choice could kill her, but she does so casually, matter-of-factly, without drama. She drools sometimes, which is hardly a secret, so she wears wristbands everywhere she goes and wipes her mouth discreetly. But she chooses the kinds of bands that are worn by skaters and roller derby girls and makes it part of the "I'm a punky but regular girl" image she strives to project. Schuyler has a tooth that is seriously out of alignment, but braces would cause her drooling to go into overdrive, so we all choose the lesser of two social deaths. She proudly calls it her fang, without much in the way of self-consciousness.

Schuyler adjusts to her reality, the one with the monster, and the world tries its lumbering, ignorant best to do the same. Julie and I live with our fear for Schuyler's future and do everything we can to help her navigate the most treacherous waters. I'm learning to identify the issues and people who are important for Schuyler and this family. I'm learning to teach Schuyler to advocate for herself while simultaneously trying to protect her from self-serving voices that would use her story to further their own agendas. I'm adjusting to a world in which Schuyler's independence is growing, particularly where that independence concerns her relationship with Julie, and with me.

The world changes. Schuyler changes, and at the same time she doesn't. She remains the weirdest and most wonderful person I've ever known. I adapt to her changes, some of which are monster-driven and others just part of her transition from Little Girl to Future Schuyler, and of course the hardest are the ones that are both. Schuyler's brain is like no other in the world, and it is guiding her in ways that no one can predict. That's scary for us, and sometimes, she admits, for Schuyler. But I'd be lying if I denied that it's also breathtaking to behold, or that it's the greatest privilege of my life to be her father.

Schuyler's not like me, and she's certainly not like you. But if the world can adjust to the scary possibilities, of which there are many, it will be rewarded by the simple fact of her existence. I have been thus rewarded. And I will continue to be, in ways that neither you nor I can even begin to imagine.

October 22, 2011

Manly Man Stuff, for Men

The concerns and issues surrounding men's health don't get nearly as much media attention as they should, but it's probably our own fault. We don't generally like to talk about it. Surpise! Men are taciturn about our health, particularly when discussing how it falters. Read more about it in this month's Journal of Duh.

Every November, however, thousands of men join the Movember campaign and grow a moustache to raise money and awareness for prostate cancer and other cancers that specifically affect men. Last year, over sixty-four thousand people in the US raised over $7.5 million. That's a lot of cheesy moustaches.

This year, I've joined up with a group of bloggers and writers who will be growing some lip fuzz for the cause. I would be thrilled if you would go donate at my Movember page.

More importantly, we would love to have other men (or women; I'm not here to judge) join the team. Anyone who has ever seen the atrocity that grows on my face knows that I'm not exactly entering this thing as a ringer. When I grow facial hair, it generally turns out looking like I need to wash my face or possibly consult a doctor. Unless you've got a job as a television anchorman or a professional soup taster, you can probably devote a month of your life to growing an ugly thing on your face for a good cause. And fighting prostate and testicular cancer is undoubtedly a good cause.

So join up, guys. The man-bits you save could be your own.

October 17, 2011

The Road

I wrote a piece called "The Road" for my friends over at Support for Special Needs, on the topic of Schuyler (surprise!) and transitions. (Nothing about cannibalism or the end of civilization, alas. Next time, I promise.) You should be reading over there anyway, but if you're not, this is a chance to get your toes wet. I hope you'll stick around.

I kind of like this essay. It's one of those instances where I set out to write one thing, a straight-forward piece about the transition to middle school, and suddenly found that I had something very personal to share instead. Ah, narcissism. Is there anything you can't do?

October 9, 2011

"If I were you, I'd go punch someone in the face."

Because poor people still like to occasionally have nice things, I tried to get an iPhone.

Because big, weaselly companies don't like to play fair with poor people, I did not in fact get one.

First, a little backstory. A couple of months ago, on the day I was leaving for a conference in Utah, my silly little purple Blackberry died dramatically, complete with heat and a delightful burning smell. I immediately took it to my local Sprint store and was met at the counter by a young man whom we will call Sprint Weasel Prime, since it is with him and his actions that our story really begins and ends.

This Blackberry was never a good one. I purchased it in a pinch after the failure of my previous phone, and its only real selling points were that it was cheap, and it was purple. And over the course of a year of use, it really only excelled at being purple. Still, its death was dramatic, taking out both the battery inside and a second battery installed by Weasel Prime. It was frankly the only impressive thing it had ever really done. Well-played, crappy purple Blackberry. Well-played.

Weasel Prime went in the back and checked inventory or played Angry Birds or whatever they do back there, and after a few minutes, he came back and informed me that the purple Blackberry could be neither repaired nor replaced. The only solution was a new phone, but WOO!, there was a different Blackberry that I could get for free, using my upgrade, which had been sitting unused for a couple of years. Given that my choices were apparently to do this or carry a broken, occasionally smoke-emitting purple phone, I went with this option, the only one I was presented with. Our transaction complete, I bade farewell to Sprint Weasel Prime and went phonefully on my way.

Fast-forward to last Friday, when I went online to pre-order the brand new iPhone, available for the first time from Sprint. According to the Apple site, it would cost me about two hundred bucks.

Except no. Apple redirected me to the Sprint site, where I was informed that the new iPhone would actually cost me a cool six hundred and fifty real, non-boardgame American dollars.

You know why, and I should have as well. It was because Weasel Prime used my upgrade to replace my crappy purple Blackberry with a slightly less crappy one. (To be fair, as an excited Weasel Prime had pointed out, it IS a flip phone, which I suppose is good if you frequently butt-dial or like to pretend you're Captain Kirk.) As a result, my only options for getting an iPhone were to sell a kidney on eBay or wait until June.

The customer service representative I spoke to on the phone was incredibly nice and understanding; let's call her Huggy Weasel. She admitted that Weasel Prime was completely wrong to say that using my upgrade was my only option.  Under my service agreement (for which I'm sure I pay a little something something every month), I was entitled to a replacement phone, either refurbished or a close equivalent model, albeit probably not purple, alas.  She went further, too, admitting that the company was 100% aware that many of their sales associates in their stores were doing the exact same thing, mostly to get existing customers out the door and free up some face time for new, revenue-generating customers. Sadly, she concluded, there was nothing she could do for me. I would have to go back to the store and get them to make it better somehow.

"If I were you, I'd go punch someone in the face," she suggested.

I went to the store, although I was admittedly hoping that some non-punching options might present themselves. Once I started talking to the guy we'll call Mule Weasel, I began to understand why Huggy Weasel recommended fisticuffs.

Mule Weasel did not budge. He did not even admit that using the upgrade the way it had been used was wrong. He presented an immovable wall formed in equal measure of bricks made of "I dont know" and "We can't do anything for you here". If there was one emotion visible on his face, it might be deep regret that my name wasn't Robert Go-Fuck-Yourself, because that was clearly what he wanted to say to me.

My favorite moment? When the original Weasel Prime lumbered over, listened to our conversation and said, with a little touch of hurt in his voice, "When I used that upgrade, you actually thanked me!"

"Well, if I'd known you were screwing me, do you think I would have thanked you?" I left shortly after that.

My final conversation with Sprint took place as soon as I got home. I called and spoke to a number of representatives. They probably don't warrant names here because the only thing they really did was escalate me up the chain. They didn't do so quickly; by the time I made it to the third rep, I felt like I was crawling up the side of Mount Doom, on a quest to throw my fancy flippy Captain Kirk Blackberry into the fires from whence it was forged.

The last time I was put on hold, it was for, and I kid you not, FORTY MINUTES. I think any time you're on hold for longer than five or ten minutes, you start wondering if the customer service representative is just hoping you'll lose hope and go away. So yeah. Forty minutes.

Finally, I found myself speaking to the Final Arbiter of Customer Service Issues Weasel. The Final Arbiter Weasel repeated my story back to me (with a few passive-aggressive "You claim"s thrown in) and then presented my options. They were as follows, in no particular order: I could 1) cheerfully pay $650 dollars for an iPhone, 2) cheerfully wait until June and use my miraculously regenerated upgrade to get an iPhone, or 3) break my contract and cheerfully pay the steep financial penalties for doing so. He also made it clear that I had three further options, which could be best expressed by replacing the word "cheerfully" with "grudgingly" in the first three options.

One thing I've learned over the years is that when you're on the phone with a customer service representative, you have one little piece of power, just one: they are almost never allowed to terminate a conversation until you agree to do so. They can put you on hold for forty minutes, they can present an implacable wall of NO, they can be condescending, and I suppose they could just sit there making little fart noises while you talk. But unless you swear at them, you can almost always say whatever you want for as long as you want and waste as much of their time as you feel like wasting. That's a free tip, kids. You just learned something!

To finally get me off the phone, the Final Arbiter Weasel offered to email the district manager for Weasel Prime's store and let him address it however he saw fit. And here's where my favorite conversation in this whole story took place.

Me: Can you copy me on that email so I can follow along?

Final Arbiter Weasel: No, I can't do that.

Me: Huh? You can't copy me on that email? Really? Why not?

Final Arbiter Weasel: Because... the email's going to contain proprietary Sprint information.

Me: What? Your email about my case is going to contain secret information? What could that possibly be?

Final Arbiter Weasel: Um, it's the how the email is formatted that's proprietary.

So there you go. Aside from this call that I'm never ever ever going to receive from the District Manager Weasel, I think that's about where things stand now and forever. I can either go away quietly, or not go away not quietly, but it's pretty clear that despite the admission of Sprint's own representative that the original action taken by Weasel Prime was inappropriate and unfair, the official stance of Sprint is "Tough titties, customer."

Now let me be very clear. I understand completely that this is a very First World problem. I know that families face big problems every day that are much more important than this. But you know what? We're one of those families. Just because ninety-five percent of my blog posts are about Schuyler and our neverending quest to help her live a meaningful life in the face of real tooth-and-claws unfairness doesn't mean that when people behave like tools, I'm going to say "Well, this certainly doesn't compare with worrying about seizures or Schuyler's education or her future or whether or not she's going to be eaten alive by this grand rough world, so no problem."

Actually, I think for special needs parents, the opposite may be true. We spend every day of our lives waging battles that we mostly expect to lose or at the very best fight to a draw. And by every day of our lives, I mean right up until the day we die, when our last thought on this earth may very well be "What will happen to her now?"

So speaking just for myself now, when I'm confronted by forces driven not by invisible, implacable monsters but instead by flesh and blood humans whose only power over me is in what fucking PHONE I can use, do you think I'm afraid? Do you think I'm likely to give up quickly, or at all, when I'm treated unfairly by a sales associate in an ugly golf shirt with a corporate logo printed on his moob?

Do you think I'm inclined to stop fighting that little fight even when it's pretty clear that I'm not going to win? When the only thing I can do to address my grievance is to do my best to convince as many others as possible not to do business with a company engaging in unfair practices? Do I quit because it's a small fight, in the shadow of my family's larger ones?

No, I'm really not so inclined. And if that makes me a dick in your weasel eyes, that's probably true. But I'm the dick that the world has made me. Well, mostly.

See you in June, Sprint.


(Note: I would like to extend my deepest apologies to any weasels, ferrets, martens, ermines, minks, otters or stoats who may have been understandably insulted by my metaphorical representation of these particular employees and agents of the Sprint Nextel Corporation.)

"Dude.  Uncool."

October 2, 2011

Schuyler is my co-pilot

The internet hasn't been a very happy place lately. Here's a little something, just for fun.