The Fated Family

There's a new entry at Support for Special Needs about how the process of building families is perhaps different for parents of kids with special needs.

A few weeks ago, I wrote about a new AAC app, Speak for Yourself, which is the subject of a lawsuit by the Prentke Romich Company. Well, the developers were kind enough to let me see and evaluate the app with Schuyler. I'll be writing something this week on that very subject. Cool, a teaser…

The Island

Once again, it's time for a new post over at Support for Special Needs. I wanted to offer something up to the parents and families out there dealing with external monsters on top of the personal ones that nip at their heels without rest. I've felt badly for special needs parents of late; it seems like the world has been unusually cruel to a lot of them. And it reminded me of something I wrote in my book, a fantasy about escaping to an island.

It was an entirely wrong-headed fantasy, and I knew it back then. Even today, however, it holds some of the same appeal to me as it did years ago when I'd stand on the beach in Connecticut with Schuyler and wish that the future that I was afraid would bedevil her was on the other side of the sea. If it was just us, protected from that future and the grand rough world, I thought, we would make it just fine.

As it turns out, we did anyway.

Fat Talk

It began, like so many silly things do here in the heady days of The Future, with a comment I made on Facebook.

"I lost ten pounds in the week since I was at the doctor. No joke. Perhaps I should let this infection linger a little longer."

The short version of backstory is that for the past week and a half, I have been sick. REALLY sick, actually, with a one-two punch of what the doctor wanted to call pneumonia but which I weaseled her down to bronchitis (because I am so very very charming, no doubt) and a wicked sinus infection. The bronchitis was under control fairly quickly, but the sinus infection, my very first, lingered painfully and disgustingly. I'm going to skip the details, but suffice to say that due to a near-constant nausea, I had very little to eat that week. When I returned to the doctor for new, hopefully not-pretend antibiotics, the nurse weighed me, and yep. I had lost exactly ten pounds in the course of a week.

So I posted that fun little status update. There are two parts to it, which I believe can be identified as a) the "silver lining" part, and b) the "obviously a joke" part.

Well, maybe not entirely obviously. Someone left what I felt was a passive-aggressive response, linking (without comment) to "How To Spot Fat Talk So You Can Stop It". When I called her on it, she took the "oh, I'm just saying…" approach, and that pushed my button, I guess. Don't walk in the room, release a flatus and then pretend it wasn't you. She said she found "fat talk" to be toxic, and I guess it didn't matter that I was talking about myself, and that no, I wasn't actually advocating the use of illness for radical weight loss.

Because here's the thing: I didn't make a choice. Getting a nasty infection wasn't part of my plan. I didn't stop taking my antibiotics or stick Cheetos up my nose. I was sick, it sucked a very great deal, and I didn't eat much. I didn't really understand how much weight I was losing because I wasn't changing out of my pajamas much. I was a delightful treat; if you had knocked on my door this week, when I answered the door, you wouldn't have thought "Sexy MAN!" You might have phoned up the Centers for Disease Control after you finished spraying Lysol in your face.

I'm going to be blunt. She seemed like a perfectly nice person, but I found her point to be extremely unconvincing, as was another comment by someone else later. Because, again, it was a joke, and again, it wasn't a joke at someone else's expense. You can't just show up on someone else's Facebook page and take their self-referencing, self-deprecating humor and sanctimoniously apply it to yourself. Well, you can, but I'm not sure why you would want to.

Anyway, the whole thing got a little out of hand. (Trust me, you want to read that. I'll wait.)

Fun Internet kookery aside, weight is a tricky issue to discuss publicly. I know that in the "fat-o-sphere" (I really did just type that), there are a lot of specific rules for how these discussions are supposed to take place, with lots of trigger warnings and the like. I know none of these rules, and I'm not sure I care to learn them. Not because I'm a dick (or not JUST because, if you prefer), but because the weight issues I'm discussing are my own. I'm not sure I need a set of guidelines to talk about me.

I've always had issues with weight, ever since I was a kid. And while I've never been morbidly obese, I can't remember the last time I was exactly fit, either. I'm going to use some actual numbers today, since I'm sitting at the low end at the moment. For scale, I am six foot, two inches tall and possess all my limbs and parts in the usual proportions.

At my worst, during what might be termed my "County Fair" days, I weighed 280 pounds. No joke. I remember that day, when I stepped on the scale and saw that number. I was young, too, maybe twenty-six or so. I spent the prime of my youth eating and (more to the point) drinking as if an alien invasion were imminent. All I got for my troubles was about ten years of photos I will never show anyone, and well, yeah, perhaps a little type 2 diabetes. (That was a joke, too. I come from a long line of genetic diabetics, although I certainly tossed enough gasoline on the fire.)

By the time I met Julie, I was way down from that, maybe 250 pounds. I lost a bunch of weight when I was diagnosed with The Beedies at 37, but then I published a book and ate and drank a lot and gained pretty much all of it back. The last time I really remember weighing myself was about a year ago, and I was at an unpleasant 245.

Now here's where it gets fun. Last week, when I went to the doctor, I was surprised to find that I weighed 223 pounds. I knew I had lost some weight; my clothes told me that. But twenty pounds, for nothing? I was pleased.

When I went back to the doctor exactly one week later? 213 pounds. That's not all that far from my doctor's target weight for me. The last time I weighed this little, I think I was still receiving lunch money.

For those of you who also have had weight issues during your life, however, you understand a kind of universal truth. Numbers don't always mean a whole lot to a fat person. Not good ones, anyway. And when I say "fat person", I mean that in the same way that someone who has been clean and sober for twenty years still self-identifies as an alcoholic. Sometimes you can tell the formerly fat person by the clothes they wear, at least a size too large, as if they don't trust what their own senses tell them in the dressing room. I imagine sometimes you can identify the formerly fat in the ranks of the extremely fit and healthy. They watch those numbers closely, perhaps a little grimly. Their own silent exercise mantra might be "Never again."

You can be the obscenely rich CEO of a major corporation, but you can still probably list the names of the bullies who made fun of you when you were a little fat kid. You can have the most beautiful and successful man or woman on your arm at an elegant dinner party, but if you close your eyes, you can clearly see the faces of the pretty girl or the handsome boy who turned you down in school with a barely-concealed smirk on their face, the universal "As if!" sneer.

And if you were a fat kid who discovered early on that you could make people laugh at the jokes you made instead of the shape of your body, then you made sure to hone those skills. You learned to make jokes, and not just innocent ones, either. You learned that the easiest way to deflate a bully was to get the crowd to laugh at him instead, so you developed a sense of humor with an edge, and you never forgot how to use it. And you never ever forgot that if you really wanted to be funny and to keep yourself in the good graces of others, you saved the most biting jokes for yourself.

And when someone shows up on your Facebook page to tell you to use nice words when you talk about weight issues, even when you're talking about yourself, you push back. And you should. Because no matter what your size now, you're a fat person. And you're not about to let someone who (in your mind) apparently hasn't figured out How Things Work take away your own best defenses simply because when they see "fat talk", they take it to heart, as if every conversation about fat people is a conversation about them. As if the warm embrace of "The Fat-o-sphere" is the only place one can find relief, with words of acceptance and maybe some denial, but never anything harsh or sad.

Some of us, and I'm going to say that includes a lot of you reading right now, some of us learned a different way. And whether we hide our fat person past or joke about it or sweat and bleed it away at the gym, we at the very least own our fat person in our own way. If you're a fat person and you try to change that, you might be a well-intentioned person, but you really ought to know better.

Yours truly at 213. Don't get too accustomed to it...

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:

@Andy_Richter
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.

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.

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

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.

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.

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.

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:

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

I'll be there. Will you?

For more information...

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.

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.

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.

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.

Alone

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.

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.

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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