Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

November 25, 2013

The Brain Pill

Today at Support for Special Needs
I don't know what I was expecting, but Schuyler's brain, by virtue of its remarkable rewired structure, is a huge unknown to us all. And the potential side effects of this med spelled out on the info sheet were daunting; I half expected to see "werewolfism" listed.

November 22, 2013

Storm Warning

We've embarked down another path with Schuyler. It's not a path we were hoping to ever step foot upon, but then, we were perhaps entertaining unreasonably high hopes.

We received a call from the school yesterday morning, letting us know that Schuyler was in the nurse's office, complaining about a bad headache. When I went to pick her up, the nurse filled in some of the details, including the fact that Schuyler was saying and doing things that didn't actually make a lot of sense. Schuyler seemed tired and a little disoriented when I saw her, and after we got home, she remained... not herself. She complained about a headache for a while, localized on the right side. By three o'clock, she was fine, but even as the afternoon and early evening wore on, she was clearly exhausted. She went to bed early without protest.

So, yeah. Schuyler had a seizure at school. The usual indicators were there, laid out like familiar road signs.

This one seemed worse than before, however, and it manifested itself differently. I made a call to her neurologist, and when he heard the details, he asked that she be brought in immediately. His urgency got our attention.

The short version is that this new manifestation of Schuyler's seizures convinced her doctor that it was time to put Schuyler on seizure medications. Before, he didn't believe that they were serious enough to justify the issues that come with these meds, which are not usually very gentle on the brain. But now, he's concerned that stronger seizures could cause her brain, in its malformed state, to become "kindle" for the harder grand mal seizures that everyone is deeply committed to avoiding if at all possible.

One of the reasons I like this neurologist is that when he talks ABOUT Schuyler, he talks TO Schuyler. He asks her questions directly, only turning to me when she's having trouble expressing herself, and when he's got hard stuff to say, he doesn't sugarcoat it for her. The conversation, some of it dark, about what could happen if her seizures progress, and about what these meds could do to her, was had with Schuyler first and foremost. I like that. She deserves that.

As we talked on the way home, Schuyler suddenly made the connection between the bad and potentially dangerous grand mal seizures we're all trying to ward off and the heartbreaking seizure she witnessed this summer when one of her friends in Miracle League soccer was suddenly stricken in the middle of the field and had to be taken away, still unconscious, in an ambulance. This thought scared the shit out of her, and I don't remember the last time I saw that kind of fear in her eyes, or watched her cry like that. It was hard to watch, but at the same time, she deserved the truth, and the opportunity to take some level of ownership over this thing. She's scared, but she's taking it seriously, in a way that perhaps she hadn't before.

Meds will be good for her. Now that her seizures have reached this level, her brain will benefit from a little control, and will be able to heal and develop without having to fight so much. The risk/benefit balance has shifted, as we always suspected it would.

As we talked it all out in the car on the way home, Schuyler tried to put herself back together. I knew she was looking for answers to questions that she didn't even know how to ask. Big, scary boo questions.

"Look at me, Schuyler," I said. "Everything is going to be okay. I'm not going to let anything bad happen to you. I promise."

Well, I realize I shouldn't have promised her any such thing. Of course I know that. But I've made much bigger mistakes in than making such a promise to her. And I truly meant it in the moment. Hours later, after much contemplation, I still do.

March 11, 2013

The Quiet Times

This morning, over at Support for Special Needs:
His advice to us has been more therapeutic than medical. "Let her be herself," he says. For us, the idea of Schuyler one day having a big seizure is oppressive. If we let it, that fear could drive every choice we make, every minute of every day for her. For her doctor, it's just another possibility, one that will be dealt with if it comes. Let her be herself. Let her live like a little girl with friends and independence and the beginnings of a life, and it's good advice, even if it can be very difficult to take.

November 15, 2012

Movember monster face

Yes, it's November, which means that for the second year in a row, I'm growing a sad little creature on my lip in the cause of promoting men's health (my own sickly facial hair notwithstanding) for Movember.

This year's timing couldn't be more challenging, with the very real need for charitable donation for the victims of Hurricane Sandy. (I've said it time and time again, but killer storms really do need more badass names, like Vladimir or Spike.) As a result, I'm not surprised or disappointed by the lack of Movember donations this year. Still, it's a good cause and I hoping to make a little difference as the rest of the month presses on.

To that end, I wrote a brief little guest post for the folks over at Totsy regarding my own reasons for getting involved in the Movember project. I'm grateful to them for asking for my input.

I realized this year what I was shooting for with my own facial atrocity. I'm not looking for some big Joseph Stalin, Magnum P.I., Sam Elliott level moustache. I'll settle for the Principal Rooney. Save Ferris!

April 14, 2012

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...

January 16, 2012

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.)

January 1, 2012

MonsterGram

Sometimes we allow ourselves to forget.

Sometimes the monster sends a friendly reminder.

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

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

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


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

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

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

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

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

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

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

October 22, 2011

Manly Man Stuff, for Men

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

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

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

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

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

May 2, 2011

Monster trap


There's a lot to say about Schuyler's ambulatory EEG, I suppose, but perhaps the most important, at least at this early stage before we get any actual data from the process, is simply this: The glue came out of her hair without any of the trauma and irritation that we experienced last time.

Maybe it was new glue, or the fact that the tech appeared to have used less of it, or it may very well have been due to the good advice of the removal tech this time. (Apparently the key is to apply a liberal slathering of conditioner to dry hair and leave it on for a while. Half an hour worked well. Last time, we were advised to just comb out the hardened glue. Seriously.) Whatever the reason, the glue mostly washed right out, and the residual bits were easily removed thanks to the tiny little hair rake we had left over from a recent head lice false alarm. There are some ugly little abrasions on her forehead from the sensors, but those should go away quickly. I tip my metaphorical glue-covered wire hat to the neurology team, and to the industry that has clearly done some work in this area in the past two years.

As for the results of the test, it's obviously too early to know anything. The procedure wasn't much different this time, but there were some key additions that changed the overall feel of it. We didn't have to take Schuyler to the neuro office, for one thing; they came to our place and wired her up here. The primary reason for that home visit was to install a pair of stationary cameras, one pointing at her bed and the other parked in front of the couch, ready to capture any seizures that might occur. It was a strange experience, having a camera pointed at us 24/7 like some sort of very very very boring reality tv show.

Schuyler was more aware of her appearance this time around. When we went to Target to find a head scarf or a hat (or, as it turned out, both), she cowered behind me sadly, trying to keep from being seen. Schuyler's disability has always been an invisible one; her sudden experience with visual difference made me realize all over again that in some ways, she is a very fortunate broken little girl.


On Friday evening, Schuyler had an awful choking experience, maybe the worst ever. It wasn't with any forbidden food, either. I was sitting beside her but didn't notice immediately, so I have no idea if it was preceded by a seizure. I do know that the camera captured me at my very least impressive, freaking out over the whole thing, but I assume it also captured me reaching into the back of Schuyler's throat and dislodging the piece of food that was choking her, so perhaps I won't make the asshole reel after all.

Aside from that, I am oddly saddened to report that Schuyler's brain was, to our knowledge, happy and healthy all weekend. We watched lots of flashy tv and stayed up crazy late, but the monster didn't seem to take the bait. I'm hoping that perhaps we just missed a seizure, which is, again, a strange thing for a parent to say.

That's the thing about this process. The one thing we want to hear -- "Your kid is not having seizures." -- is the one answer we can't get. We might possibly hear that she had one; we will most likely be told that she didn't have one during the 72-hour window of the EEG. And we'll go on wondering, and waiting to see if something with bigger claws and sharper fangs decides to show its face.


And through it all, Schuyler will continue to do what she does. She'll wear funky clothes and play Mariokarts and listen to Lady Gaga. She'll go to middle school next year and become a drummer girl (Jesus Howard Christ, remind me to tell you about the practice marimba we need to get for her), she'll make friends there, she'll make frenemies and she'll sink or she'll swim. She'll grow taller if possible, and prettier if possible, and she'll attract more looks, not just from rude adults wondering what's wrong with her but also from those boys who might simply see a girl.

Once unaware of the monster along for the ride in her head, and now just unconcerned, Schuyler will persevere, because that's who she is. I don't even know if it's ever occurred to her to give up.

April 10, 2011

Waiting for Polly


Superhero
Originally uploaded by Citizen Rob
This is what we do now. We watch Schuyler, and we wait for signs that she's having absence seizures, or not having seizures, we wait to know if she's going to be okay, or in what ways she's not. This is who we are now, both of us. I'm not an author, I'm not a father or a husband or a friend or whatever else. I am a watcher. It feels like it's all I do now. And honestly, at least for the past few months, it really sort of is.

Tonight, I saw Schuyler have an absence seizure, I think. I don't know, because without an EEG being administered, and administered at the right moment, we can't know for sure. But tonight, as we shopped at Target, I looked down and noticed Schuyler staring in front of her, mostly motionless except for a very very slight movement of her mouth that I may very well have imagined. I only observed her staring for maybe five or ten seconds, but she could have been doing it for a little longer. After she came back from whatever place she was visiting, she was drooly and crabby and seemed confused for a few minutes. Then she shook it off. Shortly after that, she suddenly needed to go to the bathroom. She went again before we left the store.

Later, after we got home, she suddenly ran to the bathroom again, this time having a very small accident before she got there. Neither of us were watching her that time, but based on her behavior after, I suspect she probably had another absence seizure.

Schuyler is confused by the ways that her body is suddenly betraying her. She doesn't understand it. Just the early puberty stuff alone is blowing her mind, after all. Add to that the further loss of control that she seems to be having, and you end up with a little girl who is frustrated and frightened, and who, when pressed for information on what she perceives, lacks the descriptive language to explain.

"My head feels weird."

"It's my little monster."

"My brain is mad at me."


Well, I don't know. Perhaps she does a fine job of explaining, in her own way.

In a few weeks, Schuyler will visit her neurologist, and hopefully she'll get another EEG, perhaps another extended weekend one where they glue a bunch of wires to her head and wait, like a hunter watching a trap from a blind. That's the best we can hope for, that something will happen during this tight window of opportunity. An author friend who has experience with absence seizures brilliantly described it as "like trying to take a polaroid of a ghost". That's perfect.

And it may all be nothing. It's feeling less and less like nothing, but then, watching for this particular phantom is making us twitchy and paranoid. We find ourselves falling into the oldest cliche, repeated endlessly by countless parents of broken children.

"We just want an answer, even if it's bad."

We said that before, when we had no idea of the severity of Schuyler's monster, and ultimately we didn't end up feeling quite that relieved once we got that answer. If this new monster introduces itself one day with a full blown grand mal seizure, I guarantee we won't be grateful to KNOW then, either. But the uncertainty wears you down. The watching, and the waiting.

Do you know what I miss? I miss being a funny writer. There was a time, long before all this, long before I discovered what I would be writing about and worrying about for the remainder of my life, when I just wrote funny stuff. Jesus Howard Christ, I miss those days.

March 23, 2011

The Dad Zone


S
Originally uploaded by Citizen Rob
Well, here we are. This morning saw an event that has loomed in the future, not as a bad thing, but just a thing. Today, Schuyler reached an important milestone in every pre-teen girl's life. You know what I'm talking about. Her crazy ride into young womanhood has begun.

(Note: Before the Corps of Righteous Indignation fires up the eFinger of Scoldage, yes, I did ask Schuyler if I could talk about this.)

When I mentioned this on Facebook, I got some interesting reactions. One was that they couldn't believe I was talking about it on Facebook, even after I pointed out that Schuyler knew I was doing so.

You can disagree with my choice to write in such detail about Schuyler's life; that's a valid discussion, and one that I've had from time to time.

But if I am going to write about the milestones in her life, why wouldn't I include the positive, non-disability ones as well? It's personal, to be sure, but I'm not sure it's more personal than the things that she has no choice but to expose every day, just by virtue of the fact that she attends a special education class and talks with an electronic device and a robot voice. And really, I think the reason she didn't mind was simply that from the moment we figured out what was going on, we presented it to her as something positive, something cool, to be celebrated. She told us that she was scared, but also that she was excited.

Schuyler is always very concerned about being taken seriously as a Big Girl, and once we explained what this meant, she stood a little taller and embraced the positives of the moment. I realize that will probably fade in a hurry, especially as the reality of the experience sinks in, but she's starting off from a place of celebration, not shame, and while I admit that we've gotten some things wrong in the past, I think we got this moment right. High fives, Team RumHud.

The other reaction I got, one that I suppose I should have seen coming, could be expressed along the lines of "Ooo, do you think you'll be able to handle this, Dad? Just wait until you have to deal with feminine hygiene products!" (Cue sinister music.)

Sigh.

So let me make this clear. No, I don't love the fact that Schuyler's entering this phase of her life, not least of all because for her, the hormonal changes that bring her first period may also be causing seizures or otherwise stirring her neurological processes in a way that no one can predict or prevent. Puberty's a lot less amusing when it bares a monster's tooth and claw.

But for me, the anxiety I felt this morning mostly grew out of the unavoidable reality that Schuyler is growing up, quickly and wildly, and the days when her otherworldliness is cute are rapidly running out. And more narcissistically, it makes me feel old. REALLY old. That's a universal Dad experience, I guess, with or without a disability. My little girl isn't going to be a little girl much longer. Perhaps she already isn't, and hasn't been for a while.

So yeah, this makes me twitch a little. Maybe more than a little. But it's not because I have some inexplicable fear of icky girl stuff. Is that really supposed to be my reaction? "Ew ew ew, stop talkin' about it and turn on the ball game already! Jesus Christ, woman..." Someone asked if I would be capable of going to the store and buying "supplies" if Julie couldn't. Really? Why wouldn't I? Someone else pointed out that as a man, I wouldn't necessarily know what to get. Which is very true. Which is why I would ask. I don't drink coffee, either, but I still buy it for Julie when I go to the store. I can read a shopping list. I can absorb information when presented to me. Honestly, I'm baffled that this would even come up, and yet part of me understands perfectly. But it's still bullshit.

So let me ask you, Society. Do you want fathers to be involved in the lives of their daughters? Then you have to let go of the Big Dumb American Dad narrative. You have to forget about Fred Flintstone, Homer Simpson, and the cast of every stupid "Tyler Perry Presents..." show on TBS. Because I do whatever Schuyler needs me to do, and in the past that has included taking her to buy new bras. Yes, I realize that everyone's comfort level will obviously be higher when Julie takes the lead on this particular issue (there's progressive, and then there's pragmatic), but this isn't something that's permanently outside The Dad Zone. It's ALL in The Dad Zone. When Schuyler needs help with this, if I'm the one here, then I'll be the one to help her.

And here's the thing. That's true of every other father I know. The only fathers I know of whom this might not be true are a generation apart, maybe two generations, and honestly, I suspect most of them would step up when the situation called for it, too. I'll make a big, overly generalized statement here, while I'm at it. If you're a father here in the year 2011 and you're NOT comfortable helping your daughter with "girl stuff"? You need to GET comfortable with it. It's your goddamn job. You're not being cute if you run away from it. You're being a shitty dad. And you're kind of a shitty mom if you let him get away with that.

Sorry, but that's my snotty opinion. You know where to send the hate mail.


January 21, 2011

"Beneath those stars is a universe of gliding monsters."


Pondering monsters
Originally uploaded by Citizen Rob

"...Heaven have mercy on us all - Presbyterians and Pagans alike - for we are all somehow dreadfully cracked about the head, and sadly need mending." -- Melville (Moby-Dick)

-----

(Note to parents of kids with polymicrogyria: While I'm not normally one who worries a great deal about so-called "triggers", and while I'm writing this in large part on your behalf, I nevertheless feel like I should give you a heads up that I'm going to be talking about stuff that you are all-too-aware of but might not particularly enjoy reading about.)

I know I recently pledged to focus on the positive, and this post might not seem to honor that. But I actually think it does, because I believe clarity and respect are positive attributes, and I need to speak about those topics today.

I received a comment on this blog recently, from someone who has left critical comments before, and that's fine. I've posted them in the past because I really don't believe that it serves anyone, least of all me, to sanitize the comments left here. I've mentioned before that I will reject a comment if it is threatening or disparages anyone besides myself, or if it is clearly part of a coordinated campaign to dump on me for whatever reason. (Long-time readers will no doubt remember the whole "Jane Book Club" episode, the one that culminated in someone calling my office phone to threaten my child, only to mispronounce her name.) I think my comments become boring if they're all "go Rob" or "me too". But this comment I ultimately decided not to publish, because I felt like it could be offensive or hurtful to other family members of persons suffering from polymicrogyria, aka "Schuyler's monster".

But the remark stayed with me, if only because it's not even remotely the first time I've been confronted by the idea it contained. If I thought it represented one crank's opinion, then I would let it go. But the fact is, it doesn't, not by a long shot. So I guess I've changed my mind about posting it.
"What will become of your life when Schuyler's monster becomes her identity? Maybe she will grow to resent that you call what makes her a unique individual a 'monster' as if were a bad thing."
Like I said, the idea of Schuyler's polymicrogyria as a kind of unique personality trait rather than a serious and potentially dangerous affliction is hardly a new one. And I'm sure that I've made it even easier to make that claim. I recently said the following, after all:
Schuyler's polymicrogyria isn't her greatest challenge, not any more. Her life doesn't seem to be in any real danger, with no apparent seizures yet, and her monster doesn't impede her everyday life with the ferocity that it does for so many other PMG kids. For that, I am grateful.
I further explained that Schuyler's difference, her uniqueness, is something that I'm still thrilled by, and I consider it my distinct honor to be the person who gets to help lead her through a world that might not understand her difference, but which is nevertheless a much better, more vibrant place because of it.

So let me make this as clear as I can. I love Schuyler wildly, and I find her to be fascinating. I think she is by far the most interesting person I've ever known, and she's only eleven. And while I acknowledge that a huge part of that comes from the fact that I am her father, I am also aware that my fascination with the strange and wonderful person she is stems in no small part to the fact that I get to see into her unique world more than most people, more than anyone with the exception of Julie.

I think I've made that pretty clear in the past, in what, like 90% of what I write?

Here's the other thing, however. If I could have a chance to experience life with a Schuyler who was born free of her polymicrogyria, if I could go back in time and spend the past eleven years with a neurotypical version of Schuyler, I would do it in a heartbeat.

Because here's the thing that a statement like "you call what makes her a unique individual a 'monster' as if were a bad thing" is sugarcoating:

Polymicrogyria is a bad thing.

Polymicrogyria, in its many forms, affects the lives of its victims in various ways, and all of them are bad things. The difficulties with swallowing that consign some PMG kids to a lifetime of liquified foods and bouts with choking and life-threatening pneumonia are bad things. The lack of speech that robs PMG patients of significant early communication and stunts their development both intellectually and socially for the rest of their lives, that is a bad thing. The accompanying cerebral palsy that many patients experience, the difficulty in walking, that is a bad thing. The cognitive issues that can range from a developmental delay to severe mental retardation, those issues are very bad things indeed, no matter how you spin them.

And the seizures, the ones that Schuyler is still in danger of developing, those terrifying episodes that strike some PMG patients at birth, those powerful electrical hurricanes swirling in those young, innocent brains that rob many very young polymicrogyria patients of their very lives before they reach their first birthdays, those are very very bad things. I follow polymicrogyria discussion boards, I see the notices that some young person has been killed by that thing that makes these kids such "unique individuals". I haven't experienced the pain that so many polymicrogyria families and those who battle other similar disorders like microcephaly and Angelman Syndrome have gone through, but I've witnessed the devastation that many of them endure.

And I never let myself forget, because it would be a crime of hubris to do so, that at any time, especially now as Schuyler's body and brain begin to undergo a whole new world of changes, our own world could be rocked, and that Schuyler's monster could grow some very big teeth.

So yeah. I feel comfortable calling it a monster, and while I celebrate Schuyler's individuality and always will, I also recognize that it has come with a price, one that she pays and will continue to pay all by herself. And I call it unfair, because it IS unfair, that she will not have the opportunity to choose her own individuality, her own path, without the unfeeling hand of that monster writing much of her narrative for her.

I understand how many people in the disability community choose to embrace disability rather than fight it. I get the Holland poem, and I understand that it means a lot to many people, even if I reject it. But I do reject it, as I reject the embrace of disability as just another thing that makes our kids and our loved ones who they are. It feels wrong to me, almost like a kind of fetishization of disease or disability.

I am not moved either way if you feel that way about your own afflicted family or your own disability. Everyone makes their own way as best as they can, and I respect that. But I find it offensive if you suggest that I should do the same, and that I should embrace the thing that, yes, breaks my child and which torments so many of her neuro-atypical brothers and sisters with such ferocity. It is a bad thing, as far as I am concerned, and I will call it a monster.

I started using the monster metaphor long before I wrote a memoir, but it wasn't until an interviewer asked me about it during the press attention that the book generated after its release that I gave it much thought. I realized that it was a metaphor that I embraced, not for literary purposes but for personal ones. I needed to imagine Schuyler's polymicrogyria as a monster, because I can't fight a little girl's broken brain. But I can fight a monster. I can imagine myself going into battle against one of those.

And I don't even envision that fight as something heroic, either. Maybe I did, in the beginning, but not now. I'm not Perseus, heroically outsmarting and killing archaic beasts. I'm not St. George slaying the dragon.

If anything, I am more like Captain Ahab, fighting obsessively against a monster that I can never defeat. Like Ahab, I am aware of the futility, but I am also unable to turn away.

Schuyler's affliction, the one that hurts and kills other children, the one that touches her more gently than some but still colors her life so completely, it is a monster. If someone comes here to try to make a case that it's not, and that it is simply one of the innocent, beautiful little parts of her personality that make her the purple snowflake that she is, they should do so knowing that I will disagree, and I will find their disrespect for this bad thing to be offensive.

Melville's description of the sea ("...this velvet paw but conceals a remorseless fang") works pretty well for Schuyler's manifestation of polymicrogyria. It's not cute. It makes Schuyler's life hard, and moreover it devastates and even takes away the lives of others. I'm with Ahab on this one. I'll never quit.

Thus, I give up the spear.

November 28, 2010

A Beedies thing

I don't usually cross-post much, and I tend to keep the diabetes talk off this blog, for the simple reason that it tends to bring out the assmonkeys in battalion strength numbers.

But I wrote an article for dLife, called "Club Membership", that I think is worth sharing, precisely because of the previously mentioned assmonkeys.

Anyway, here you go.

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UPDATE, 12/3 - I guess I had a little more to say...

May 3, 2010

A Message from the Foundation for Children with Microcephaly

A special message for all my fellow polymicrogyria peeps and families with other related brain monsters (yo, what up?). This convention is a fantastic opportunity to meet with the top doctors in the field (including the brilliant Dr. William Dobyns; meet him and tell him how much you liked my book, just to see if his face twitches) as well as other families just like yours.

Bonus: I'll be there, so you can finally come punch me in the face if you like. Man, I'm a giver.

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To All of Our Special Stars & Their Families,

The Foundation for Children with Microcephaly has recently celebrated their 3rd birthday having official 501(c)(3) nonprofit status. We want to include our families in our celebration by offering Early Bird pricing again to register for our annual convention for three days only!

How it Works:
Download your registration form at www.childrenwithmicro.org/wearenotalone.html - Send in your completed registration form and payment POSTMARKED ON MAY 3, 4, or 5th and receive Early Bird pricing to register for our amazing annual convention. This special pricing can save a family $100 or more! In order to participate and qualify make sure that your envelope is POSTMARKED ON MAY 3, 4, or 5th!

Families who register on or after May 14th cannot be guaranteed an appointment with the world's leading physicians, but can be placed on a waiting list. There are still physician appointments available - send in your registration form to secure your child's doctor appointment!

You too can contribute to making this year's convention bigger and better! Let your local hospitals, doctors offices, & therapists know about FCM and our unique annual convention, "We Are Not Alone". They may know other children diagnosed with Microcephaly, Lissencephaly, Polymicrogyria or other closely related neurological disorders. Refer them to the website so they can let their patients know about our convention. We want this year's convention to be the biggest and best - we don't want any of our families to miss it because they didn't know about it! Thank you for helping us spread the word!

Feel free to call us with any questions or concerns! We still need help organizing the convention - if you have extra time on your hands and can contribute please let us know!

Thank you all for your support! I look forward to meeting you at "We Are Not Alone" - the 3rd Annual Microcephaly Convention! Remember... we also welcome families who have children diagnosed with Lissencephaly, Polymicrogyria and other closely related neurological disorders!

Best Wishes,

Jenni & Kaylee

Jenniffer Lewis
Founder / CEO
Foundation for Children with Microcephaly
Office: 623-476-7494
jenni@childrenwithmicro.org

April 12, 2010

Spare the rod, redux

Every time I write about corporal punishment, I get more angry emails and comments than any other topic. Seriously. And keep in mind the number of times I've referred to special needs kids as "broken", or Easter as "Zombie Jesus Day". When I express my highly charged and controversial opinion that folks who incorporate physical violence against their kids into their parenting toolbox might want to rethink that particular approach, I get reactions. Some people like to suggest that I write about it specifically so that I'll get the reactions that I do, feeding off the conflict like some kind of emotional vampire.

Actually, that's not why I do it. I write about it because (and again, this might come across as radical liberal crazy talk) I believe quite strongly that hitting your kids is a somewhat fucked up thing to do.

Anyway, you've heard me talk about it before, so this time, I'll simply link to a story on NPR ("Spanking Leads To More Aggressive Kids", April 12, 2010). The report discusses a new study published by the journal Pediatrics, which showed that kids who were spanked more than twice a month as three-year-olds were considerably more likely to become aggressive five-year-olds than kids who weren't spanked.

So there you go. You may now fire up the "there's nothing wrong with a little swatty-poo on the hiney if it keeps my dear wee ones from running in front of a locomotive" and "I was spanked as a child and I turned out to be a model citizen who only occasionally shoots up a post office" comments, starting... NOW.

January 17, 2010

I bleed the people.


"I bleed the people."
Originally uploaded by Citizen Rob
Schuyler was writing sentences using spelling words for a homework assignment the other day. I popped by her computer to see how she was doing. One of the words she had to use was "bleed". She had a sentence on the screen.

"I bleed the people."

When I asked her what she meant, she just laughed, and kept laughing as I tried in vain to get an answer. She eventually changed it to something about bleeding when she lost a tooth, but I don't know, when your little girl writes "I bleed the people", it's hard to let that go. When she embarks on her future as a brutal despot, don't say I didn't warn you.

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Schuyler has been such a constant presence in my life for the past ten years that it's hard to remember what my life without her was like. It's strange, thinking that she never heard me play trombone in a performance (something that she should perhaps be grateful for), or that she never met my first wife (again, something... well, you know). The first thirty-two years of my life had no Schuyler in them, and in all the most significant ways, I feel like they were preparatory years.

But in the past ten years, Schuyler has changed, a lot. People who meet her now see a completely different person than the ethereal, sweet but disconnected little girl I described in my book. They probably think I'm a crappy writer, and they may very well be right about that, but it's not because I didn't describe her accurately at the time. She's changed dramatically in the last three or four years. She's growing up, and becoming the person she's going to be.

She's changing still.

Those of you who have met Schuyler and interacted with her for short periods of time might not believe this. Those of you who have spent a little more time with her may have an inkling of what I'm talking about. She's always been a happy kid, friendly to a fault and energetic to the point of manic, but for the past few months, maybe as long as half a year or so, Schuyler has had occasional but intense lows. She'll start crying for no apparent reason, particularly when I'm away on trips or at work late. She's always tested Julie in different ways from myself, and I suppose that's normal. But in these past few months, she's been sad, sometimes hysterically so. Recently, I've gotten to witness more of it myself, rather than just hearing about it.

Schuyler just turned ten; a few weeks ago, we bought her first training bras. (Yeah, you can imagine how well I took that particular milestone.) As her behavior became more erratic, I think we chalked it up to normal, hormonal changes. But in the past couple of months, and particular the past few weeks, the cloud over Schuyler's mood has darkened. Her emotional state, previously unflappable, has become more tenuous, even sensitive. Perhaps this is what most of you have dealt with in your own children, but it's new to us.

Sometimes when we asked her why she was crying, she would bring up some injury or slight from a classmate, but often these were from days before. I don't believe she was trying to hide anything from us. I think that she was grasping for an answer, trying to reach back to something that made sense, to herself as much as to us.

I don't know why it never occurred to me, of all people, that something a little harder than pre-adolescence might have been at work. The little red flag didn't pop up until I asked her why she was so sad, and she answered "I don't know!" Not defiantly or dismissively, but with real confusion, and a look in her eyes that seemed to ask me what exactly was going on inside her heart.

That's the answer she gives now, when she doesn't have an injury to fall back on. Earlier this week, after hitting her funny bone at school and crying on and off for the rest of the evening, she started off by saying her elbow hurt, but after a few hours and no apparent physical damage, she simply answered "I don't know."

"Schuyler," I asked, once it had occurred to me, stupidly late but finally, "Do you ever feel sad and you don't know why?"

She looked at me, quickly and wide-eyed, as if I'd said something wise, something that had been in front of her all along but had somehow escaped her own realization. "Yes, Daddy."

"I do, too," I said. "It's okay to feel sad. And you can tell me any time it happens, okay? You don't need a reason. I'll always listen to you when you're sad."

She's been hugging harder than usual lately, too.

I don't know much about hormones and little kids, and certainly not little girls. I think I'm probably overreacting, which is my fatherly duty in all things, of course. I do know that when I was Schuyler's age, I'd first begun to experience the dark clouds that came to visit me with greater intensity as I got older. I didn't know what it meant at the time, and none of my own family seemed to notice, which surprises me a little, in retrospect, since my own grandmother killed herself a few years before I was born.

But then, it took me a long time to accept the possibility that Schuyler might just possess one of my own monsters for herself, and that it might just be waking up.

So yeah, I have no idea if Schuyler's simply like every other kid in the world her age, and maybe she's just growing up and living more fully in a world that's not always very kind or easy to understand. It's hard, though, watching her find such emotional valleys now and again, especially seeing as how they contrast so sharply with the genuine highs that have defined her throughout the first decade of her life.

I've been reading a great deal over the past couple of days about childhood depression, and while it's easy to scare myself with the lists of symptoms, I also have to admit that they sound pretty similar to the normal behaviors of little kids who are standing on the edge of adolescence, staring into a future they can't possibly understand. I read about the circumstances in a kid's world than can trigger childhood depression, and they sound an awful lot like Life.

But I have to admit, when I read about depression being caused in part by physiological stressors and genetic vulnerabilities and, God, difficulties in successfully communicating, I feel a real squeeze of fear in the very center of my chest.

I've struggled to understand Schuyler's monster for seven years now. Now I'm facing the glimmer of a possibility that she might be carrying another monster as well, one that I may have given to her and which I understand all too well.

Understanding it doesn't help. I don't know how to protect her from this monster, either.

October 12, 2009

Go Team Schuyler


Julie, Schuyler and I ("Team Schuyler", naturally) have decided to participate in the 2009 Childhood Apraxia Walk in Fort Worth, after following a link on organizer Anne Devlin's Facebook page. I realize that you may be struggling with the idea of me actually walking for three miles without there being some kind of automotive emergency or the actual breakdown of civilization. But this is a cause that goes right to the heart of us, because verbal apraxia is one of the manifestations of Schuyler's Bilateral Perisylvian Polymicrogyria.

It's the monster that keeps her from speaking.

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia.

The Childhood Apraxia of Speech Association of North America or CASANA's "mission is to strengthen the support systems in the lives of children with apraxia, so that each child has their best opportunity to develop speech". CASANA is the only charitable organization in the United States whose exclusive mission is to represent the needs and interests of children and families affected by apraxia.

We're hoping that if you live in the area, you'll join us for the 2009 Childhood Apraxia Walk in Fort Worth. It'll take place on November 15, 2009 at Trinity Park in Fort Worth. It will be a family-friendly walk with the option of a 1-mile or a 3-mile. If you register by October 26, you'll be guaranteed a Walk for Apraxia T-shirt in your size.

If you can't join us, we would appreciate your sponsorship. All proceeds from this event benefit CASANA's apraxia programs and research.

Seriously, we hope you'll be able to join us. You'll get to spend three miles with Schuyler (no more than ten or twenty feet of which will take place in a straight line, I suspect; she walks like a moth flies), and if my old, fat Robba the Hutt body fails me from the extreme trauma of walking three whole miles, you can point and laugh with a clear conscience and non-boomeranging karma.

TEAM SCHUYLER

August 26, 2009

Our gratitude will almost certainly be inadequate


I'm bracing myself for the Conservative backlash against the commemorations already beginning in honor of Senator Edward Kennedy, who passed away last night. Those of you who feel like doing a little dance on the man's grave would be well advised to do it far away from me or my family, or any of the tens of thousands of families just like ours. Or, if you really look at it, probably families just like yours, too. I challenge any of you to show me a politician of either party within the last century whose legislative actions have done so much to help Americans, in ways that have a direct impact on their lives.

Here's a very short, woefully incomplete list of why I'm not particularly interested in hearing why you didn't care for Ted Kennedy. I'll bet you can find at least two pieces of legislation on this list, laws molded in part or entirely by Senator Kennedy, that have literally saved my daughter's future. Hers, and countless more just like her, both living and not yet even born.

1964: Head Start
-- Provided meals and early education to pre-school children through the Employee Opportunity Act. (Schuyler participated in a Head Start program when she was a baby. It was part of the early intervention program that probably saved her.)

1971: Federal Cancer Research Program
-- Quadrupled the amount of money spent by the federal government to fight cancer.

1972: Title IX
-- Demanded equal funding for men's and women's athletics on college campuses.

1975: Individuals with Disabilities Education Act (IDEA)
-- Guaranteed free and appropriate public education to children with disabilities. (This is the law that provides for Schuyler's education, and for EVERY SINGLE CHILD WITH A DISABILITY in public schools in this country. Every single one of them. Think about that for just a moment.)

1978: Civil Rights Commission Act Amendments
-- Expanded the jurisdiction of the Civil Rights Commission to protect people from discrimination on the basis of disability.

1984: Improved Access to Polling Stations
-- Required polling stations to provide physical accessibility for physically disabled and elderly people on federal election days.

1986: Employment Opportunities for Disabled Americans Act
-- Allowed disabled workers to receive SSI benefits and Medicaid coverage.

1988: Fair Housing Act Amendments
-- Prohibited discrimination towards people with disabilities in the sale or rental of housing.

1989: National Military Child Care Act
-- Established the Department of Defense child care system.

1990: Americans with Disabilities Act
-- Prohibited discrimination against any qualified individual with a disability in job application procedures, hiring or discharge, compensation, advancement and training. (This is another big one for Schuyler and her friends. There are people in this country whose lives, and the quality of those lives, have been saved by this law. That's not even remotely an exaggeration.)

1990: Ryan White CARE Act
-- Provided assistance to states to develop effective and cost-efficient AIDS care programs, aimed particularly at early diagnosis and home care.

1993: National and Community Service Trust Act
-- Created AmeriCorps and the Corporation for National and Community Service to help expand volunteerism and education grants for students who choose to volunteer for service after college.

1993: Student Loans
-- Allowed students to borrow money for college directly from the federal government.

1994: Family and Medical Leave Act
-- Provided up to 12 weeks of unpaid leave for family emergencies or after the birth of infants.

1994: Crime Act
-- Secured funding for 100,000 new police officers, imposed new penalties for crimes involving gangs and firearms and authorized the Police Corps, a program to award college scholarships to students in return for a commitment to serve as police officers.

1996: Kennedy-Kassebaum Act
-- Enabled employees to keep health insurance after leaving their job and prohibited insurance companies from refusing to renew coverage on the basis of preexisting medical conditions.

1996: Mental Health Parity Bill
-- Eliminated limits on mental health coverage that differ from other covered illnesses.

1997: State Children's Health Insurance Program (SCHIP)
-- Supported state efforts to provide health insurance to uninsured children in low-income families.

2000: Minority Health and Health Disparities Research and Education Act
-- Improved data systems and research on the extent and severity of minority health problems, and authorized significant resources to help enhance the delivery of health care to minorities.

2001: No Child Left Behind Act
-- Required more rigorous testing of public school students and permitted parents to transfer their children from low-performing to higher-performing schools. (Clearly I've had issues with the implementation of this law, but the philosophy behind it is sound, and even in its flawed state, it has helped a lot of kids with disabilities.)

2006: Family Opportunity Act
-- Provided states the opportunity to expand Medicaid coverage to children with special needs and allowed low- and middle-income families with disabled children the ability to purchase coverage under the Medicaid program.

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Senator Kennedy, on behalf of those who are unable to say it for themselves, thank you for your service to this country.

June 13, 2009

Stephanie's Day in Dallas

If you're there today, keep your eyes open, we might just be around...

www.stephaniesday.com

Stephanie's Day, "A FREE Resource Fair for children with special needs and their families/caregivers" at NorthPark Center, Saturday, June 13, 2009 from 10am-2:00pm. Stephanie's Day was founded by CBS 11/TXA 21 President and General Manager, Steve Mauldin, in honor of his daughter Stephanie who has autism.

Kids can enjoy music, games, entertaining activities, and much more at Stephanie’s Day. Meanwhile, parents and caregivers can find a wealth of resources available through local non-profit organizations, therapy centers, advocacy groups and parent-to-parent networks.

This is a FREE EVENT located at NorthPark Center in Dallas, Texas.

NorthPark Center
8687 N. Central Expressway
Dallas, Texas 75225
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Update (and postmortem)

If I had one criticism of the event, it would be that the organizers need to decide if they are interested in holding a general special needs event or one that focuses exclusively on autism. I think either one would be great; I certainly don't begrudge anyone in the autism community the attention such an event would attract, particularly in the present media environment where autism continues to receive so much focus. The rising tide lifts all the boats, as they say. I suspect every kid with a disability benefits from that kind of attention. not just the ones with autism.

But aside from a handful of specific providers (CP and fragile X, for example), the focus of the event was definitely on autism, which shouldn't be a surprise considering how it began. But I do think they ought to consider either working hard to expand their scope to include a much wider range of disabilities or making this about autism outright.

That's my sincere opinion that exactly no one asked for.

Not surprisingly, Schuyler managed to sneak into the tv coverage for a second or two...

May 28, 2009

Calling out Doctor Leaf

Ronald Leaf, director of Autism Partnership, a private California-based agency, says he prefers to help autistic children such as JW learn how to navigate their world without gadgets. "If we could get children to talk without using technology, that would be our preference," he says.



Dear Dr. Leaf,

I was saddened and disappointed to read your comment in the USA Today article about the Proloquo2Go application for the Apple iPhone and iPod Touch. I felt it was a glib dismissal of a technology and a communications philosophy that has helped and will continue to help thousands of young people who are unable to speak but deserve to be heard.

I am the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter, a memoir that tells the story of raising a little girl with a rare brain malformation that leaves her unable to speak. The book ends, and her future begins, when she is given an augmentative alternative communication device that helps to facilitate her speech. Four years later, because of this technology (in her case, a Vantage Lite, produced by the Prentke Romich Company), Schuyler spends the better part of her day in a mainstream third grade class alongside her neurotypical classmates. She recently passed the modified TAKS test (the No Child Left Behind component for the state of Texas) and is on track to continue her schooling and even graduate from high school. Where four years ago, she was pushed off to a special education Life Skills class and was given no prognosis for an independent life, Schuyler may very well get a chance to live whatever life she chooses. None of these possibilities were placed on the table until she had the ability to speak and to learn how to construct language. All of this, because AAC technology gave her a chance.

Schuyler is hardly alone in her achievements. Her story is only unusual in that she was ultimately able to receive the speech device that could help her. She and her fellow AAC users represent only a fraction of those nonverbal kids who stand to benefit from this technology. AAC helps thousands of kids and adults find a voice and overcome a wide range of disabilities, from Schuyler and her polymicrogyria to kids with cerebral palsy or, yes, autism. As you are no doubt painfully aware, the frustration of being unable to speak can be as crippling to a child as any physical or mental infirmity. I have seen it time and time again, children who were not just nonverbal, but closed up inside an internal world of their own, unable to make the basic human contacts that they needed so desperately. All because they had to struggle simply to make their most basic needs known.

Kids who use AAC technology gain more than words on a "gadget". (In all fairness, that was a word used by USA Today, not yourself.) They find a door into a larger world, a door once locked but now ajar and ready to be kicked open. Those of us who have watched AAC technology at work have found that when these kids are suddenly able to speak through the use of electronic assistance, they show dramatic improvement in other areas of communication such as sign language and even verbal speech. This effect is of particular interest, and promise, to children on the autism spectrum.

"If we could get children to talk without using technology, that would be our preference." As the parent of a child who can't speak but who has a world of things to say, I must confess that I'm baffled by that remark. If you are saying that you'd rather see these kids use their natural voices than a computerized voice, then of course I agree. But what if the path to finding that natural voice involved technology, as is so often the case? Would you dismiss that technology so casually if there was even a chance it could help?

There's more than just a chance.

Dr. Leaf, you were quoted by USA Today because you were perceived as an expert in your field. I sincerely hope that you will take this opportunity to educate yourself about AAC technology. The next time you are called upon for answers and for wisdom, you might just change someone's life, and give them a voice.

Robert Rummel-Hudson
Plano TX

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