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.)

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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.

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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

A Musical Interlude

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





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

Ladies and gentlemen, The Awesome Song:

The Big Bad

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

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

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

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

A Different Drummer

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

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

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

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

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

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

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

Voices of Change

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

Quality

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

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

Storm-toss'd

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

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

"Can we go home?" she asked quietly.

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

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

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

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

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

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