April 11, 2012

Andy Richter Saddens the Universe

When we talk about the dehumanization of people with disabilities, there's a general dismay that receives a certain amount of lip service, but there's a sad reality, too. Not every slur against every disability receives the same amount of outrage. Not every lobby inspires the same level of hesitation from those who might be considering making a joke in a film or on television or wherever. Some of our tribes are very, very small. The number of fists we can shake at the sky is limited.

Which is probably why comedian and Conan co-host Andy Richter didn't hesitate to make this joke earlier tonight:

RE: the-baseball-cap-that-fits-over-the-tops-of-the-ears trend: is microcephaly now considered sexy?

There are a few reasons this bothers me, some of them very personal. But let's get this out of the way first: Andy Richter is a smart and funny guy. And that's part of the problem here. When someone like Tracy Morgan makes some joke about "retarded people", we are outraged for sure. But on some level, we might also look at both the joke and the comedian and say, "Well, honestly, that's pretty dumb."

But Richter has been one of the more intelligent and on-the-fly funny personalities on television for a long time. And there's something about this joke that seems especially cruel. The joke doesn't work (inasmuch as it works at all) unless you know about microcephaly. The joke is that persons with microcephaly have small heads. Get it? And to make this joke, Andy Richter had to be completely aware of what microcephaly is.

Of all the problems with this joke, awareness isn't one of them.

A few harsh points, then. When Richter asks if microcephaly is now considered sexy, he's kidding. If he wasn't kidding, however, the answer would be mostly no. It's not sexy because the word "sexy" is probably only really appropriate when applied to adults. Persons born with more pronounced microcephaly don't generally make it very far into adulthood. Many of them die young, buried by their heartsick parents.

I had the opportunity to meet with a great many of these parents and their amazing children a few summers ago at what is now called the Microcephaly, Lissencephaly and Polymicrogyria Convention, a huge labor of love presented by the Foundation for Children with Microcephaly. I got to know some of the most amazing people in the world at that conference; it literally changed my life.

And I learned to appreciate just how closely their world intersected with mine. At this conference, kids were examined by some of the top experts in the world, including Dr. William Dobyns, the doctor who diagnosed Schuyler's polymicrogyria. (The first thing he did when he met Schuyler in 2005 was measure her head to rule out microcephaly.) At the closing lecture, Dr. Dobyns surprised me by reporting that aside from microcephaly, the most common diagnosis he had given out at the conference was polymicrogyria.

Polymicrogyria. Microcephally. Lissencephaly. Not many advocacy groups for these monsters. No telethons or puzzle pieces or a month for awareness. No inspiring actors in popular tv shows. No movies about a Very Special Child. And no hesitation by a popular and successful tv comedian to make a joke about them, a joke that his clever fans might have to google to even understand and laugh about.

If Schuyler's disability were one that showed on her face, if she were shaped differently because of the little monster in her brain, then perhaps a famous comedian could make a joke about her, too. Perhaps I should feel lucky. Lucky that Schuyler can hide in plain sight, lucky that her appearance doesn't bring out the worst in others, lucky that she might just get to grow up without going to a movie or watching tv and seeing herself as the punchline to a joke.

But I don't feel lucky. I feel sad, mostly for the friends I made at that conference three years ago. Some of those friends have probably buried their children by now. Those who haven't probably don't have the time or the energy to be outraged at Andy Richter's monstrous, stupid joke. I'm sad for all their beautiful children, and for all the kids out there whose disability marks them in a way that attracts pointing jackass fingers. I'm sad for all the ones who can't understand the jokes that are being made, or are even aware that they are being mocked at all. That makes it worse in my eyes, not better.

Once again, I feel like the world really isn't ready to make space for our kids or our families. There's a table, and that table is set for the empowered, and it's even set for the disenfranchised.

But only if you're human. Only if you're better than a punchline.

UPDATE, 11:30am

About an hour ago, Andy Richter removed the offending tweet. It it's place, he made the following statement:

I offended a lot of people yesterday with a tweet using the word "microcephaly". It was not my intention to mock disability. I normally am not bothered by offending people, but in this case, I am. I make jokes, and this was one I shouldn't have made. I apologize for my insensitivity in this instance.

I can't speak for anyone else, but I would like to thank Andy Richter for this gesture. We all have a lot of growing to do, myself as much as anyone.

April 9, 2012

Anatomy of a Storm

It's Monday, which means I'm about to make excuses for not posting anything since LAST Monday. This week's excuse is a little better than usual; I got a massive sinus infection at the same time that my tenacious lung funk made its Big Push to end the war. The doctor said I probably have pneumonia and wanted me to go to the hospital, but I managed to talk my way out of that fun idea. We'll see how smart that plan turns out to be.

Anyway, there's a new post up at Support for Special Needs. And while I like to think you're actually reading all the posts I write over there ("Another click? Screw this, my hand hurts…"), I hope you'll make a special effort to go see this one. Not because it's unusually wonderful or important, but because it feels personal and a little raw for me. I guess I just want you to read this one a little more than usual.

April 2, 2012

Little Monster

Happy Monday, and welcome to April! (I'm not sure why I just welcomed you to April. Is it supposed to be any better than March?) There's a new post up at Support for Special Needs. It's a topic I've touched on before around here, but in the aftermath of the whole discussion in other online venues of whether or not it is appropriate to "hate" a child's disability, I thought it would be a good time to revisit the whole "monster" metaphor, particular with a different crowd over there. There are always new people eager to have something at which to shake their angry little fists, after all.

In a brief followup to last week's post, we've gotten our hands on a copy of the Speak4Yourself app that has cause such a kerfluffle in the AAC world. We've all been playing with it over the weekend, and once we've had a chance to fairly evaluate it, I will definitely do a write up.

My initial observations? It is really robust, with a bit of a learning curve. At the same time, it is much less similar to MinSpeak than I thought it would be, and I'm less convinced than before that the lawsuit by Semantic Compaction and PRC is going to gain very much traction. There are a few features I'd like to see (although in all fairness, I probably just haven't found them yet), and some (such as the seamless interaction with texting apps) that I think are brilliant.

So more soon on that.

art by Edith Meyer, 2007

March 26, 2012

The Iceman Cometh, with his Legal Team

Happy Monday, friends.

Today's post at Support for Special Needs touches on the uneasy state of affairs between AAC device makers and app developers trying to utilize tech advances in consumer electronics to further their craft.

Things have taken a turn for the ugly. Well, uglier, anyway.

(Bonus: Schuyler gave me a quote, typed directly into the doc on the computer. She did a great job of saying exactly what she wanted to say, about how she feels about her current device and what she wants to do in the future. I'm really proud of her.)

Also, the ever-cool Jen Lee Reeves, with whom I spoke on a panel at SxSW, is giving away a signed copy of my book. Go check out her post, especially the parts where she nice stuff about me. Because you know me. I like that.

March 19, 2012

Inscrutable World

I know, I've been quiet all week. I think I picked up a bad case of Hipster Pox at SxSW, so I've spent the week mostly coughing. I'm getting really good at it.

Anyway, there's a new post at Support for Special Needs. It's sort of about soccer, but not really.

Vague enough for you? My work here is done.

March 12, 2012

The Shiny Future

It's Monday, which this time means I'm at SXSW in Austin (the Prodigal Son returns!) speaking on a panel, and also that there's a new post over at Support for Special Needs. Are these two things related? Maybe a little.

If you're in Austin today, it's not too late to come say "Hi, Rob!" or "You suck, Rob!" or whatever. I'm cool either way.

March 6, 2012

Spread it. End it. That's all.

March 7th is the annual "Spread the Word to End the Word" observance day. The word, of course, is "retard", and if you're still using it, tomorrow would be an excellent day to at least think about why it is you've been sticking to your retard guns, so to speak.

You'll note that I don't say "you should stop using that word". That's because I can't tell you whether or not you should stop. I can't choose your vocabulary for you any more than anyone else can, and I don't think I have the right to try.

But I hope you'll think about it.

To that end, I hope you'll take a moment to go read the thing I wrote about this topic last May, called "Just a word". And as usual, someone else says it better than I do:

March 5, 2012

Schuyler's Dragon

I just found out that someone bought the rights to publish Schuyler's Monster in Chinese.

How cool is that?

Schuyler has declared it "super cool". So there you go.

Puppies and Cookies are Swell

It's Monday, so it's time for a new post over at Support for Special Needs. This one should cause considerably less gnashing of teeth and scented hankies lifted to worried brows than last Monday. You can decide for yourself if that's a good thing. I think it probably is.

Also, a reminder to SXSW attendees. The panel I'm participating in will take place a week from today. Well-wishers and hecklers are encouraged to come say hi. (If you're a heckler, stick to bugging me. Jen and Kate won't stand for your shenanigans OR your tomfoolery.)

Schuyler and Maxie, in 2007

February 27, 2012

No Offense

Here's a donut if you didn't get one.
Happy Monday, friends. I hope you got some donuts.

If it's Monday, it must be time for another blog post over at Support for Special Needs. This might be one I ever so slightly regret posting in the very near future, which of course means you should go over and read it right now.

I keep meaning to mention something. If you want to comment on this post, I hope you'll do so over on the SfSN site if possible. I'm not sure if anyone reads the comments over here, not on my Monday posts, anyway.

Have a swell week, yo.

February 24, 2012

It's just a thing.

Schuyler brought something significant home yesterday. It wasn't much to look at, just a scrap of paper with an email address. It was from one of her lunch table friends, the met I met when we had lunch.

Schuyler may be on her way to having a real and age-appropriate friend.

Hopefully they'll opt to spend some time together outside of school. I'm trying to stay out of this, aside from bugging her about how lunch went every day like a big pest. Schuyler sometimes needs a little persistent nagging to follow through on things. I can do that.

Anyway, I guess it paid off, because now they appear to be friends. Schuyler emailed her to ask if she wanted to go to the mall sometime soon. We'll see how that turns out.

Earlier this evening, when Schuyler was responding to an email from one of the older girls she met when we visited my friend's band program last year, she told her about her new friend. She described her as nice and kind and funny. Interestingly, she didn't mention that her new friend uses a wheelchair.

I felt pretty certain that this was a good thing, Schuyler simply listing the things that are the most important to her about her friend. But at the same time, I recognized that there was a possibility that she might see the wheelchair as a negative, something she didn't want to tell someone.

So, I asked her about it, because I'm that guy.

"So I'm curious about something," I said. "Why did you decide not to mention that she uses a wheelchair?"

Schuyler's eyes lit up. "Oh yeah!" she said, going back to the still-unsent email and adding "and she uses a wheelchair". I liked that response; it suggested that she might have actually overlooked that fact.

"Do you think that's an important thing to say about her?" I asked.

Schuyler thought for a second. "Yeah, it's important."

"Do you think it's a bad thing?" I asked.

"No," she said. "It's just a thing."

Well, there you go.

February 20, 2012

Unfair Monsters

Monday means a new post at Support for Special Needs. Schuyler went to the American Girl store over the weekend. I should have seen what was going to happen, but sometimes my hope for Schuyler's happiness blinds me to the dangers of the world, even when the danger IS her happiness.

February 15, 2012

Not alone, although not entirely not alone, either

A few days ago, when Schuyler asked "Are you going to come eat lunch with me?", some of you thought it was a bad idea, maybe leading to further ostracization from her peers. But I think everyone knew what I was going to do. And, really, how else was that going to go down? How do you tell a child who is experiencing problems making friends that yes, you know she wants you to come eat lunch with her at school, but sorry, that's just not going to happen? As Julie said, "She's lonely and she wants to eat lunch with her father. How is there more than one possible answer to that?"

So yeah. Yesterday, with the school's permission, I ate lunch with Schuyler in her school cafeteria. She was thrilled, I had a good time, and perhaps most importantly, I got a better idea of what's really going on.

It's... complicated, I guess.

If you, like me, were imagining Schuyler sitting lonely and forlorn by herself at the lunch table, I am very happy to report that she's not. Not even close. As soon as she came down to the main office to fetch me, she took me to meet the people at her table. This was not what I expected.

Schuyler doesn't eat lunch alone. But she kind of does, in a way.

Schuyler's table is populated by a regular group of kids who are familiar with each other. It's apparently the same ones every day. They are kids with special needs, and they all sit together and are checked on periodically by teachers. They are taken care of, for sure, and for the most part they seem to get along just fine. I can't tell you how the kids feel about it, other than my own. I got the impression that many of the kids at the table have somewhat more serious impairments than Schuyler. They appeared to feel safe at their table, and that is tremendously important. It's probably the MOST important factor of all.

But as I said before, it's complicated. Schuyler and I talked entirely to each other, almost completely apart from the rest. She didn't engage with them, and they didn't engage with her. There was one notable and very encouraging exception.

There was an awesome little girl sitting next to Schuyler with whom I chatted over the course of lunch. In our conversation, I asked her if their lunch table crew was assigned and if everyone else was seated in a specific place. She said that no, anyone can sit anywhere they want, or (perhaps more to the point) with whomever the want. Schuyler piped in that there's never room at any of the other tables. "No one wants us to sit with them," she said.

So I don't know. On one hand, I understand how their table can be a sanctuary, and a way for the teachers to monitor everyone and make sure their needs are being met. That's not a small thing, and we have no problem with the special education team setting up this arrangement if they feel it works best for the kids. These teachers take their kids seriously, both educationally and as a community. Ultimately, we trust this special education team, completely.

At the same time, however, the thought of Schuyler's table as a kind of typical-kid-enforced Island of Misfit Toys, that saddens me. It happens, a lot, and from what I remember of that age, it is perhaps inevitable on some level. But still.

As we discussed the lunch situation after Schuyler got home, something very interesting began to reveal itself. I understood why Schuyler said she eats alone now. She doesn't really identify the people who sit at her lunch table as her friends, which was a little baffling at first since she was incredibly nice to them and introduced me to them all. And that little girl I talked to was great. It's not my business to describe someone else's child to you, so I'll simply say that her impairment appeared to be entirely or mostly physical, not developmental. She seemed to really like Schuyler and also took care of some of the other kids despite her impairment. I liked her immediately. I have high hopes for this relationship, assuming they're not actually mortal enemies and I just didn't pick up on that.

But much like with her typical classmates, Schuyler hasn't made connections with any of them, not on the level of real friendship. And by the time I left the school, I suddenly understood why. Schuyler may just have the same problem with the kids at her lunch table that she does with everyone else.

The neurotypical kids at Schuyler's school may not understand how to build authentic relationships with persons with disabilities. But actually, neither does Schuyler.

She's different, particularly in how she communicates, and that can be a daunting obstacle for typical kids. But she's equally stymied by the communication challenges between her and kids with more serious developmental disabilities. I've written before about how Schuyler stands astride two worlds, being ambulatory and also socially adaptable enough to almost pass in the typical world but also being significantly challenged enough to be forever different.

Sometimes that duality is a gift. In this case, when meaningful friendships are hard enough for her to understand, much less form, it is probably standing in her way. It's not that she doesn't see value in her special education classmates. Much to the contrary; she is as loving and as fiercely protective of them as ever. But her ideas of what friendship means are probably delivered to her mostly through a neurotypical lens, via television and through what she observes in her integrated classes. Her understanding of those typical friendships is limited, and extremely naive. Schuyler tries hard but doesn't quite succeed at being typical. Apparently she's not entirely successful at being disabled, either.

The good news is that Schuyler's exceptional special education director is extremely open and enthusiastic about getting on board with a mentoring program like Best Buddies Texas. A mentoring program would be a very important step in teaching Schuyler's typical classmates how she can be a valued friend and classmate.

It hadn't really occurred to us until now that Schuyler might need a little extra help in that area as well. She's so close. I'm confident that she'll get there.

February 13, 2012


It began with a simple question at the grocery store last night. We were choosing all the pieces for Schuyler's lunch and were trying to change things up a little. We wanted to get her some new drinks but were unsure if she would be able to open the bottles. Schuyler's polymicrogyria has some big features and some small ones, and one of its less frightening but still annoying impairments involves her fine motor skills. We asked her if she thought she would be able to open the bottle. She said she thought so, but still seemed a little unsure.

"Well, if you have trouble, you can ask one of your lunch friends to help out, right?" I asked, remembering that one of her teachers had mentioned how she thought Schuyler ate lunch with some friends.

Schuyler sighed and simply said, "No."

"Why not?" I asked.

"Because I always eat lunch by myself."

And there it was.

We told her that we'd heard that she had friends that she ate with, but she shook her head. "I eat by myself every day," she said. "No one will eat lunch with me."

It was an emotional ambush, this conversation, and it took the wind right out of our sails. I don't know why we were surprised by this variation on a sadly familiar theme in Schuyler's complicated middle school life, but of course we were. It's happened before, that thing where someone told us a Maybe Thing ("I think she eats with a little group of friends..." or "She could go on to live independently one day...") and our desperate parent brains translated it into a Definite Thing. We can't stand to think of her being alone, so we allow ourselves to believe that of course she's not alone. I've written about how Schuyler's relationships at school are different, but it never occurred to me to imagine her sitting at the lunch table all by herself while the mass of chattering classmates swirled around her, past her, without her.

I didn't know how she would react to the offer (I could only think of how I would have responded to a similar proposal in my youth), but I asked her if she would like for Julie or myself to come to school and eat with her. She surprised me a little by saying yes immediately. As we continued our trip through the store, she asked me again a few times.

"Are you going to come eat lunch with me?"

Later, as we unloaded the groceries from the car, Schuyler looked at me and simply asked, "Why doesn't anyone want to be my friend?"

Because there were some pieces of my heart still intact from her earlier confession about her solitary lunches. They needed breaking, too.

I wish I could say that Schuyler's situation is unusual, but any time I've mentioned this on FaceBook or Twitter, I hear from other special needs parents and grown persons with disabilities, about how yes, their kids had no real friends, certainly no neurotypical ones, or how they themselves had grown up thusly. Some writers with disabilities told me that as adults, they still struggled to find friends, or had given up altogether.

A recent study by Dr. Anne Snowdon shocked exactly none of us when it revealed that more than half of the Canadian children with disabilities that she studied had either only one friend or no friends at all. Only one percent of the kids she studied spent an hour a day with a friend. By the time they turn ten, social pressures diminish most of whatever efforts neurotypical kids may be making to connect with their disabled classmates. The window closes, and rarely opens again.

My reaction to that study was the same as many of the parents I heard from. I was mildly surprised that the number of special needs children who DO have friends was as high as it was, frankly. But then, these are polite Canadian kids who haven't been taught their whole lives that their value and that of their friends and social groups is measured by how very very exceptional they are.

With all the loving adults whom she loves and who love her back so intensely, and with so many people on the Internet pulling for her, it's hard to imagine a kid like Schuyler having difficulty making age-appropriate friends. It's also unfair of me to blame her classmates, even though I guess I just did. These are twelve year-olds, they have so little experience with concepts like inclusion and compassion and intrinsic self-worth. In the Lord of the Flies world of middle school, they are all trying to keep up, and their world is one of communication, fast and fluid. They may simply lack the ability to slow down and connect with someone like Schuyler. I get that.

It's not easy for her, like it's not easy for most special needs kids. And while Schuyler seems happy enough, it is becoming clear that this matters to her more than she generally lets on. I feel like she's waiting on a solution from us. As she should.

We're exploring some mentoring programs that might be able to help, such as Best Buddies Texas. There aren't any middle school chapters in Texas at this point. Well, there ought to be. Maybe it's time there was one, and who better to lead that than Schuyler?

When Schuyler asked me why no one wants to be her friend last night, we brought in the groceries and sat on the couch. While she leaned against me, her head on my shoulder, I tried to explain the best I could that it can be hard for people to make friends with someone who is different like she is. It's not always that they don't want to, I said, but spmetimes they're just not sure how.

She seemed to understand why that might be, even before I said more. "They talk so fast," she said. 'I can't talk like they do."

I didn't have any great answers for Schuyler, and I didn't pretend like I did. I could only tell her that yeah, this is hard, but we'd think of something and we'd find a way to make things better. As has been the case many times before, she didn't seem disappointed by that sad, shitty answer. We could fight that particular monster another time. I think mostly she just needed to put it out there.

Living in The Future

It's Monday, and that can only mean one thing (besides renewing your secret desire to burn down your place of employment). Yes, it's my weekly post at Support for Special Needs.

This week, I am especially grateful to SfSN for the opportunity to talk about the upcoming panel I'm participating in at SXSW Interactive, and a very special video project being put together as part of that panel.

So please go read my post and contribute your thoughts on video if you can. As you'll see from my own contribution, cleaning up and looking nice for the camera is clearly optional.

February 6, 2012

Simple gifts and sleepless nights

Monday is upon us, and with it a new post at Support for Special Needs. We had a moment this weekend, a simple and lovely moment before Schuyler's monster showed up and wreaked havoc on her. I am hopeful that the moment will live in her memory longer than the rest. I think it will.

Addendum, written on Sunday night, after everyone went to bed)

I've got more to say, I guess. My apologies for the tone being pretty much the polar opposite of my SfSN post. It happens.

A few hours after the incident I described above took place on Saturday, Schuyler had what we believe was another complex partial seizure. Not a bad one, and she was distracted by a case of the hiccups and a case of the giggles shortly thereafter. Do seizures give you the hiccups? Or the giggles, for that matter? Fuck if I know, but at least she bounced back from the seizure.

But then on Sunday, she had another, and it was bad. Bad like she hasn't had in a long time. The details would embarrass Schuyler, but it shook all of us up pretty thoroughly. It happened when she was by herself in the bathroom at a restaurant, too, and if Julie hadn't been there to go in and check on her, I don't know how it would have gone down. So does this mean that Schuyler, a twelve-year-old girl with a fierce independent streak, can't go to the bathroom in public by herself anymore? Maybe it does. And that kills us.

Early this evening, Schuyler's rough day finally ended in hysterical tears over what was actually an extremely minor situation. I think she just ran out of Schuylerness and needed to cry some "I fucking hate my monster" tears. As for me, my own personal definition of heartbreak has been updated now.

I'm going to be blunt now. When I go online, I read a great deal about accepting and even celebrating the neurological and physical tweaks that make kids like Schuyler different, and for the persons with disabilities and their families for whom that approach feels appropriate, I say good for them. Really, I do. I'm not in the position where I think I should tell other people how to face disability, either their own or that of the ones they love, and I would hope that I could expect the same in return, although I am all too aware that I can't, not always.

But let me make something clear, as if I haven't already. Schuyler's polymicrogyria makes her unique, but it also robs her of much of the life that she wants to live. It doesn't make her a special snowflake. It takes away her speech and leaves her working like mad just to make herself understood, and infinitely more distressing for her, to understand that world for herself. In a school full of preteen girls whose social existence revolves around communication and a growing maturity that she does not yet have, Schuyler is at a remarkable disadvantage, and she knows it. God, does she know it. "I want to talk like everyone else," she said again over the weekend, this time to Julie. She has a developmental disability, but she gets it, with growing clarity.

Schuyler probably wouldn't understand the nuances and complexities of the concept of neurodiversity, but I feel relatively certain that she would reject it entirely if she could. Schuyler doesn't want to celebrate her differences. She wants them to fucking get out of her way. And now, as always, my chief frustration as her father is that I am powerless to give her that. All I can contribute to the fight against her monster is to write about it, and all that really does is validate the fears and the anxieties of parents with kids like her, and to clarify things a bit for everyone else.

But for Schuyler, though? All I can do is be there to clean her up and dry her tears, and to tell her that yeah, I understand that it sucks, but there's nothing that can be done to change it so she just has to work harder to make her way in this grand rough world. And that's a shitty, stupid answer, but on this particular multiple choice quiz, there's the truth, and there's a bunch of lies, and while some of those lies might be comforting and cheerful, they are still lies, and I simply won't tell them to her.

What I really want her to know is that I would step in front of a train if it meant that she could live the rest of her life without her monster. I would do so without hesitation, and if they looked on my shattered face afterwards, they might even find a smile. But that's not an option. And on nights like tonight, that is hard to bear.

Post-Ictal Puppy Bowl party

January 30, 2012

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.)

January 28, 2012

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.

January 23, 2012

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.

January 16, 2012


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.)

January 15, 2012


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.

January 2, 2012

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.

January 1, 2012


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.

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 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

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.)