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by Robert Rummel-Hudson

Field of Dreams

April 29, 2013 in Featured by Robert Rummel-Hudson

imageOne of the most satisfying relationships that Schuyler has had over the years has been with the Miracle League. For those of you who don’t know, Miracle League gives over 200,000 kids and young adults with disabilities an opportunity to participate in a variety of sports, primarily baseball but also soccer, basketball, flag football, and even bowling, in leagues designed to accommodate their disabilities while at the same time giving them authentic sporting experiences. There are over 250 Miracle League organizations in the US, Canada, Puerto Rico and even Australia. If you’re looking for a pure good in this world, you couldn’t do much better than Miracle League.

A few weeks ago, Schuyler was asked to participate in a special baseball camp sponsored by the Texas Rangers Baseball Foundation. The Rangers have been huge supporters of Miracle League over the years, including providing crucial support for the construction of the Miracle League field in Arlington. The Foundation partners with Baseball Fantasy Camps, LLC to host a Fantasy Day every spring for Miracle League players.

I can’t tell you how much it means to these kids. Not just the fun and the activities and the attention, but also the fact that they are taken seriously. That’s not a small thing. The kids were broken up into a number of smaller groups and went from station to station, working on various aspects of the game. They were mentored by Texas Rangers Alumni, some from way back, others only recently retired, and it was clear that these former players and coaches were getting as much from the kids as they were giving.

I’m sure I’ll miss someone, but I’d like to thank them individually. The alumni who were present included Larry Hardy, Dave Hostetler, Kevin “Shrek” Mench, Don Stanhouse, Pete O’Brien, Tim Crabtree, Mike Munoz and Ken Suarez. Schuyler’s group was mentored by Kevin Belcher and Mark Brandenburg, whom I used to watch pitch for the Rangers back when I was in college. All these guys gave of their time, and it meant the world to every player and family member there.

It’s so easy to get caught up in the day-to-day issues and the differences and the anxieties of raising a kid with special needs. It’s easy to forget that they have a lot of the same dreams that the rest of us had, about summers spent in itchy uniforms with local sponsors’ names stitched on the back (I played for the Odessa American, the local paper) and breaking in a new glove that wasn’t right until it looked like it had been run over by a truck a few times, and that perfect once-in-a-season swing that sends the ball into forever.

Unrealistic? Perhaps, but they were probably just as unrealistic when I was thirteen and imagining my name being announced at the old Arlington Stadium. It’s on the backs of those dreams that we grow up and discover the dreams that were meant for us.

For a lot of kids, baseball dreams loan them wings for a while until they find the ones fitted just for them.

(Note: Next time, perhaps we’ll ask them to just put her first name on the back of her jersey; “Rummel-Hudson” hilariously took up most of the back of her shirt, almost encircling her number. But as a friend pointed out, Boston’s Jarrod Saltalamacchia still has her beat by a letter and a half. She’ll have to make baseball history some other way.)

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by Robert Rummel-Hudson

A Life’s Work

January 28, 2013 in Featured by Robert Rummel-Hudson

imageWhen I was a very young child, I knew what I was going to be when I grew up. I was going to be a zookeeper. I don’t know where that came from, exactly. I loved animals (then as now; just witness the ridiculous new giant chinchilla cage sitting behind me as I write this), so I guess to me five year-old mind, it made sense. The zookeeper was the guy with all the animals. There was a certain logic at work. And he could make other people actually clean up all the poop, so it seemed like a sweet gig.

As I grew older, I had a very brief period around the fifth grade when I thought the thing I wanted to do with my life was play baseball. It didn’t take long for me to let go of that particular dream. During my brief Little League career with the team sponsored by the local paper (the Odessa American, by golly), it was clear that even among gawky eleven year olds, I was a pretty poor baseball player.

When I began playing trombone in junior high, what became my longest running and most serious future aspiration was born. I was going to be a professional musician one day. Maybe I was going to play trombone, or perhaps I would become a band director. In college I decided I would become a musicologist. But music was my destiny, that was clear. That particular dream took a long time to let go of, and honestly, I still sort of quietly identify myself as a trombonist first and foremost. (My current skill level would not necessarily back that up.)

It was in high school that I discovered that I could write, but I didn’t really take it seriously as a future until later in college. And it wasn’t until I had Schuyler and began walking down her path with her that I found my subject, both of my book and my subsequent writing.

More than that, though, I found my life’s work.

I suspect that parents of neurotypical, unimpaired children come to feel like their lives eventually revolve around their kids. For parents of kids with disabilities, however, this becomes the literal truth. Whatever we were doing before, wherever we were heading with our lives, those things remain, but it is in the full-time and unending work we do for and with our children that comes to take the lion’s share of our souls. It is the work that drives our days, and it is the future anxiety that keeps us awake at night. Whatever I thought my life was going to be, I am now Schuyler’s father.

I would never describe that job as easy; just the worry about her future, especially after I’m gone, incrementally eats away at me like a mouse hiding in the walls of a house. But having said that, and having acknowledged the challenges that we as a family face and the even greater ones faced by many others, I can nevertheless tell you this without hesitation. I have never entertained a dream, no matter how secretly epic, that has ever come close to the deep satisfaction and immeasurable personal growth that I experience as a result of being Schuyler’s dad.

I’m a much better person because of Schuyler. I can remember the person I was before she was born and before her monster was identified, and I’m not impressed with him. I’ve not exactly arrived at the person I want to be now, either, but I can kind of see what that guy might look like. Schuyler’s the one who has shown that to me.

It wasn’t her job to do that; she doesn’t exist to make me a better person to to be anyone’s special little inspiration. But the byproduct of her life is extraordinary. Not just for me, but for everyone in her life.

Schuyler has become my life’s work. In doing so, she has given me such a life to work with.

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by Robert Rummel-Hudson

“I don’t know.”

October 29, 2012 in Featured, Future Glimpse by Robert Rummel-Hudson

It started as a good afternoon, a father/daughter trip down to a far away city see Schuyler’s godparents and enjoy a few days of fun. We were having lunch at a nice restaurant, and Schuyler was using her iPad to order her food.

I must admit, she was doing so under slight duress. When Schuyler is around people who mostly understand her impaired speech, she shies away from using her speech prosthesis, even now that she’s using the iPad instead of a dedicated speech device. She’s twelve, almost thirteen, and her powerful desire to pass for neurotypical has become a force of nature. We encourage Schuyler to be herself, but she has little use for neurodiversity as a philosophy in her own life. It’s heartbreaking, because “passing” is almost certainly going to lead her down a sad dead end road. If she succeeds 90 percent, she’s still a little girl with a broken brain and a disability that sets her apart from others. For now, however, as she begins to navigate the already difficult waters of her teen years, Schuyler remains deeply disinterested in exploring her differences.

But I pushed her to use her iPad, and it was going okay. The iPad affords her a needed measure of cool that her speech device never did, enough that using it publicly doesn’t cause her a great deal of embarrassment.

Well, not until her PRC LAMP Words for Life speech app began to crash. Repeatedly. And not until some basic design problems with the app and its layout caused her to accidentally clear the screen and force her to start over more than once. Schuyler was fine until technical issues (which I will most likely discuss in detail in a later post) became an embarrassment. Everyone was very patient, including our server, but still. Schuyler was desperately trying to complete a very simple communication task, and her device was failing her. It was making her look incompetent.

It was humiliating her.

As soon as she finally managed to place her order, after the server left, Schuyler’s meltdown began in earnest. Sensing where this was going, I took her away from the table, and as soon as we were away from everyone else, she began to cry. She didn’t cry gently, or cutely, either. Schuyler was sobbing, clinging to me, soaking my shirt and shaking while she cried. She was hurt, and she was angry. Angry at her iPad, angry at me for making her use the device when she could have just as easily pointed to something on the menu so that I could order for her, angry at everyone for being kind and patient while she worked through her technical problems. And angrier still at her monster. She kept pointing to her head and then signing “angry”.

Her brain was mad at her, she said.

After a few minutes of unrelenting tears, I grew concerned. Well, I grew more concerned, not about the crying but by the fact that it wasn’t stopping. I stepped back from her and put my hand on her chin, bringing her eyes to mine.

“Schuyler, ” I said, “why are you so upset? Why are you still crying?”

“I don’t know,” she said sadly, desperately.

Not casually, in the way that kids will say “I don’t know” because they’re not allowed to say “Kiss my ass.” Schuyler’s answer was a kind of pleading, a lack of understanding. They were words of desperation, born from mystery. Having said it, having expressed her confusion and her aimless rage, she began to calm down at last. long enough for me to get her to laugh through her tears and to break the terrible spell.

She didn’t know, but I can imagine why she was so upset. Schuyler lacks the words to say what she’s feeling sometimes, and she probably lacks a complete grasp of where her emotions are taking her in those moments. She’s too innocent, too guileless, to clearly understand what she’s raging against. I believe the frustration she wants to express might just be that she simply wants to be able order her stupid lunch with her own voice, just like everyone else around her, just to be able to say “I want the chicken chipotle enchiladas” without having to type it, and then retype it, and retype it again, on a device that she wishes was hers to play Angry Birds on, not to try with mixed success in some wholly inadequate and embarrassing way, to simply speak. To speak. Like people do. People who aren’t broken, who never think twice about how to say the simplest things. She cries, she rages against the world and her iPad and me and God, because we’ve all failed her. She cries because her monster is unfair, and she knows it, and the unfairness of it rankles her. If these concepts are unclear to her now, I suspect they won’t be forever.

Schuyler says she doesn’t know.

But I think perhaps I do. And knowing doesn’t help, not one damn bit.

————

Please visit Build-A-Bear Workshop’s blog, where co-founder Julia Roberts shares her daughter’s special needs journey. We’re grateful to Build-A-Bear Workshop for supporting this community over the past year.

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by Robert Rummel-Hudson

Possibilities

September 17, 2012 in Featured by Robert Rummel-Hudson

The other day, during our now-regular Friday lunch visit with Schuyler at her school, we spoke to one of the school administrators. She had something she wanted to bounce off of us.

“Do you think Schuyler would be interested in being a cheerleader next year?”

Well, now. That’s an interesting idea.

Briefly stated, Schuyler possesses a brain that doesn’t work like most, not even the brains of other people with Bilateral Perisylvian Polymicrogyria, her particular monster. Schuyler’s manifestation of PMG, unique in all the world according to the leading researcher in her field, presents itself primarily as a developmental delay and a pretty serious speech impairment. Schuyler can’t speak, not like most kids and not with much clarity, and her understanding of the world around her is extremely naive and without much in the way of nuance.

In some ways, she is like any twelve year-old girl, and in others, she is even wise beyond her years. But while she is making progress academically and is fighting the good fight as far as keeping up with her mainstream classmates is concerned, in some very significant ways Schuyler moves through the world in confusion. Her speech is weird and hard to follow sometimes, at least until you know her well, and the thoughts she is trying so hard to express aren’t always what you might expect. If every kid is a special, unique snowflake, Schuyler is a very odd snowflake indeed. A purple one, with blinking LED lights, perhaps.

To say that Schuyler joining the cheerleading squad was not an option that had naturally occurred to any of us might be an understatement.

As we got more information, it became less of a daunting thought. In my youth, the cheerleading squad was a gathering of a very specific kind of kid. They weren’t just the popular kids, although they were very much that. They were the über-popular kids, the ones who showed up at school every day in the shiniest, fanciest cars arriving directly from Valhalla. They were the ones who only spoke to each other and their courtiers, and they were often the meanest of the mean girls. Mean, but perfect. I was no shrinking nerd in school; I had a fairly diverse group of friends in band and in my classes. But I can say with absolute certainty that in all my years in junior high and high school, I never exchanged so much as a word with any of the cheerleaders, at least not after they joined the squad. I don’t know that it would have ever even occurred to me to try.

But apparently things have changed in this brave new world, at least at Schuyler’s school. Eighth graders can sign up for the squad and learn the routines, and if they show up for auditions, they are generally accepted. There are about twenty of them, sounding more like a spirit squad than cheerleaders. The faculty advisor who runs the squad is apparently an extremely laid back person (in my mind, I always imagine the cheerleading advisor as Violet Beauregarde’s mom in the remake of Charlie and the Chocolate Factory), and I can’t imagine Schuyler’s teacher would have said anything to us about this without having a pretty good idea that it would be okay with the faculty sponsor.

“Of course, Schuyler might not be able to do the cheers,” she said diplomatically, “but I’m sure she would be great at the routines and the dancing. And I’ll bet she would just love it.”

And she would.

With Schuyler, it’s always a challenge, identifying the things that present real possibilities for her. As parents, we take the official party line of “anything is possible if you just believe, by golly”, but as parents of a different child, we are accustomed to a delicate dance, the one where we try to open as many doors as possible for her while at the same time gently working to avoid the ones that don’t easily accommodate her broken parts. Schuyler will probably not join the speech club, or drama, or any academic groups. She won’t take foreign language classes, challenged enough by mastering English in a reasonably communicative way (speaking, as she does, in a dialect that she shares with no other human in the world).

And as wonderful as she is, Schuyler will always be a deeply weird kid. Too weird for the likes of the cheerleading squad, or at least so I would have thought.

But maybe not. Maybe I’m selling her short. Perhaps my fear of watching her fail at this most social of endeavors, at a time that social interactions are already giving her fits, maybe that fear has caused me to step cautiously when I should be helping her to leap fearlessly.

It’s probably a purely academic issue. After all, if we’re still living in Texas by the time Schuyler enters the eighth grade, that will mean that things have gone terribly wrong with our Chicago plans. And once we’ve moved, I’m certainly not so pollyanna that I think that every school in America has replaced the Mean Girls’ Cheer Squad with the Inclusive Spirit Group.

But the possibilities remain, if only someone else is creative enough to make them available, and if we’re brave enough to take the chance, to risk one more giant heartbreak if it might mean a chance for friendships and acceptance, which are the currency of her twelve year-old world.

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by Robert Rummel-Hudson

They walk among us!

September 10, 2012 in Featured by Robert Rummel-Hudson

(WASHINGTON DC) – Noted cryptozoologist and science blogger Dr. Garth Pooht has released a paper in the science journal Stuff About Stuff that hopes to debunk once and for all the rumored existence of the mythological cryptid known as “the special needs father”.

“I’ve done extensive research on this matter,” said Dr. Pooht, from his office in his mother’s basement, “and despite the persistence of rumors claiming that there are fathers out there who actually get involved in the education, therapy and care of their children with disabilities, the internet-based evidence strongly suggests that these cases are so rare as to make the consistent existence of this creature extremely unlikely. Many of these reported incidents no doubt represent cases of ‘feel good about dad’ stories from special needs moms, who as we know are the only truly vital caretakers in the lives of these kids. And some may be intentionally perpetrating this hoax.”

Dr. Pooht, the acclaimed author of My Dinner with Bigfoot and Jet Skiing on Loch Ness, does not discount the possibility that in extremely rare cases, special needs fathers may occasionally step up to complete simple tasks, provided that they have been given detailed and repeated instructions on how to do so by their spouses. “You would be surprised at some of the basic commands some of the more clever fathers can learn, with a lot of patience and hard work from the mother. But as always, it is mostly a testament to the near superhuman strength and skill of the special needs mother that can very occasionally compel the father of the species to get off the couch and do anything. And of course, this is virtually unheard of during football season.”

Dr. Pooht will be signing copies of his books at the Kinkos on 17th and Elm on Sunday at 4 pm.

AUTHORIZED WIRETAP TRANSCRIPT,
MYTHOLOGICAL CREATURES FRIDAY NIGHT POKER GAME
(excerpt)

BIGFOOT: So yeah, I am so tired of the blurry photos. Can I just say?

LOCH NESS MONSTER: Aye, don’t even get me started. Don’t any of these new camera phones have the capability to focus?

BIGFOOT: Right? Did you see the last one in the Inquirer? Not flattering. It made my butt look like a beanbag. Please tell me I don’t look like that.

YETI: No way, man. The camera adds a couple hundred pounds. And the fur. Hey, who’s the new guy?

SPECIAL NEEDS DAD: Hey, everyone. Thanks for letting me in on the game.

LOCH NESS MONSTER: Not a problem. We had a spot open up after Chupacabra got spotted passed out on the beach and went back to rehab.

YETI: That dude’s got a problem. Fame has messed him up.

BIGFOOT: So what’s your beef this week? We like to talk shop. It’s hard, being a cryptid.

SPECIAL NEEDS DAD: You mean besides the usual string of online articles about how special needs mothers are doing God’s work, all by themselves? And the dearth of writing at all about special needs fathers? Google “special needs moms” and “special needs dads” and see what you get. I only WISH someone would take a blurry picture of me at my kid’s IEP meeting.

BIGFOOT: Wait, you go to those? I didn’t think fathers were even allowed.

SPECIAL NEEDS DAD: That’s the thing. I’ve been to every single one of those meetings, along with every single doctor’s visit and every therapy session. I spent two nights in the hospital with my kid, I never left the room. And every time, every SINGLE time, I get that look that says “What are you doing here?”

YETI: I get that a lot during the Everest climbing season.

SPECIAL NEEDS DAD: If I go up to the school and meet with a teacher, I get handed instructions and reports and told to “give these to Mom and tell her blah blah blah.” Same thing when I call for tech support for my daughter’s assistive tech. “Oh, Mom must be busy saving the world. When she comes down from Valhalla next time, show her how to reset the system.”

YETI: Dude. You’ve kind of got some issues.

LOCH NESS MONSTER: No, I totally get it. That’s not right. Do they ever come at you in wee little submarines?

SPECIAL NEEDS DAD: Well, no. Not really. But still. Last time I had to go find my own chair.

BIGFOOT: Man, I totally get how you feel. You’re suffering from a persistent narrative. I get the same thing. Have you seen my Wikipedia entry? “Bigfoot is commonly reported to have a strong, unpleasant smell by those who claim to have encountered it.” Really? That’s just hurtful.

LOCH NESS MONSTER: I got called a piece of driftwood.

YETI: I’m still trying to live down that Bass-Rankin “Bumble” thing.

SPECIAL NEEDS DAD: How do you guys keep doing what you do? This is starting to wear me down a little.

BIGFOOT: The thing you have to do is remember why you’re doing what you do, and just keep doing it, regardless of the narrative. I mean, it’s not like special needs moms don’t deserve the good press, right?

SPECIAL NEEDS DAD: Of course, they’re awesome!

BIGFOOT: Exactly. Think of yourself as the invisible partner in all this. It does’t matter what society thinks of you. It doesn’t change what your kid knows, or how your family functions, right? Like, I read how one photo of me was actually a bear with mange.

YETI: Ouch.

BIGFOOT: Yeah. Did that sting? Of course it did. I work hard on this coat. I like to think of myself as possessing rich, buttery fur.

SPECIAL NEEDS DAD: It is very nice.

BIGFOOT: Thanks. And I have to have the self-confidence to know that, despite what others may think. I’m not just going to let myself go and stop scaring campers just because someone doesn’t appreciate my hair care regimen. Are you out there, fighting just as hard for your kid? You know you are. And I’ll bet you could rattle off a list of other special needs dads who do the same thing. Just because that social narrative says you’re Homer Simpson doesn’t mean that you are. You guys should just keep doing what you’re doing.

YETI: Hey, are we going to talk all night, or are we going to play poker?

LOCH NESS MONSTER: Just once, I wish we could play Twister or something. I can barely even hold my cards with these stupid little fins.

————-

Be sure to check out site co-founder Julia Roberts’ posts about her daughter and Champerina and about traveling Champ on Build-A-Bear Workshop‘s blog! They are a huge supporter of this special needs community!

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by Robert Rummel-Hudson

The Return of the Short Bus

August 27, 2012 in Featured by Robert Rummel-Hudson

Schuyler and I waited outside this morning, quietly discussing what her day would likely involve, this first day of seventh grade. We waited, as we have every year since she started attending school here seven years ago. Waited for the short bus, the butt of so many jokes and the enduring symbol of her freedom.

I have mixed feelings about Schuyler’s return to school. On one hand, spending the summer with me can’t be a picnic for her. She typically spent two hours a day communting just so she could watch me work (my gratitude for Netflix on the iPad has no bounds), after all. She didn’t have a great many friends to hang out with, and no big exclusive family vacation to look forward to. She swam, she hung out, and she used her extreme emotional manipulative powers to force her poor father to eat ice cream with her until he began to resemble Robba the Hutt. By the time school rolls around, she’s probably ready for a change.

But at the same time, I’m not sure she wants that change to come in the form of returning to the classroom. In the past year or two, as her experience has become more… challenging, Schuyler’s enthusiasm for school has waned a great deal. Well, I suppose ours has, too. And perhaps the most frustrating aspect of that comes from the fact that the teachers with whom Schuyler is working now are among the best she’s ever had, and in a school district that is among the very best in Texas. If something isn’t quite working here, why is that? And how reasonable are our hopes of finding better than this, the most promising educational opportunity she’s had and is likely to ever have?

But as we worry about the future, Schuyler’s anxiety exists entirely in the now. Last night, she burst into tears, seemingly out of nowhere, saying through her tears that she didn’t want to go back to school. And then she said it, the thing she’s said before but which never ever fails to break my poor sad father heart right in two.

“I want to talk like everyone else.”

She knows that’s not going to happen. I think she just needs to express it now and again, just to sound her frustrated howl at an uncaring moon from time to time. But God. I have never known how to process the complicated feelings that this statement invokes in me. I feel pretty sure I never will.

So this morning, her short little bus with the same beloved driver she’s had for a few years pulled up outside, and she ran up the steps and inside without so much as a glance back. I used to say that Schuyler was fearless, but it’s not that simple. She has fears, some of them daunting and all of them based in her reality, which isn’t an easy one. But Schuyler faces her fears like no one I know, and when I have my own anxieties, she’s the one I watch to see the way out.

——

Be sure to check out site c0-founder Julia Roberts’ posts about her daughter and Champerina and about traveling Champ on Build-A-Bear Workshop‘s blog! They are a huge supporter of this special needs community!

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by Robert Rummel-Hudson

Letting go. Just a little.

August 6, 2012 in Community Wisdom, Featured by Robert Rummel-Hudson

Schuyler had a good week, aside from some seizure activity here and there. I’d say she might have even had the best week of her summer, because she spent the better part of it with her beloved godparents down in San Antonio.

Schuyler is always looking for an upgrade. One day she’ll accept that she’s stuck with the parents she was born with.

The week was a little chaotic because I was out of town and Julie had to work a few shifts. The arrangements I’d made to have Schuyler watched fell through the week before, and her godparents were enjoying their last week of vacation before going back to work, so it worked out nicely for everyone. (Well, it worked out because Schuyler’s godparents are amazing human beings who are willing to drive across a state the size of France in order to spend time with her. She might actually be better off if Julie and I were to perish in a crash or murder each other in a duel.)

But before it worked out, Julie and I had made a choice, one that never actually had to come to fruition. We’d decided that Schuyler would be able to spend some time, a number of hours in fact, at home by herself.

The next time something like this happens, she will likely do so.

Because she can. I think. I believe. I hope.

It’s tricky with any kid her age, and we recognize that Schuyler isn’t your usual twelve year-old girl. And I would be lying to you if I tried to claim that I am 100% on board with the idea of her staying by herself, even with her mother working just minutes away and with her iPad from which she can text us if she needs to. To be honest, the idea scares the hell out of me. It puts a black little pit in the very center of me, into which drain my courage and my belief in my own abilities as a father to protect her, to take care of her.

Independence is hard. It’s probably hard for most parents, but for those of us with kids who have disabilities, kids who are different and for whom the world isn’t always a good fit, it’s incredibly difficult to find the right balance. We work hard to give her the tools to communicate, we teach her how to keep the dangers of the world away as best we can, we show her how to function alone, how to feed herself and keep herself entertained and not to open the door for anyone at all, ever. We instill in her the skills that any twelve year-old should know.

But when the moment arrives, sometimes we blink. Sometimes our belief in our child’s ability to live an independent life, even for a few hours, well, that belief fails us. And I’m not sure about this, but part of me thinks that when it happens, we might just fail her, too, just a bit.

I’m glad that Schuyler got to see her godparents this week, incredibly glad. She loves them beyond measure, and they are probably the closest family she’s got. But when I think about the decision to send her to stay with them for a few days, I hope that I can honestly say that we did it because she would have fun, and because she deserves some summer vacation and deserves to be treated like royalty by two people who love her dearly, and not because we were afraid to let her breathe some independent air.

And the next time the need arrises for her to take care of herself for a few hours, I hope we won’t blink. I hope we’ll give her the room she needs to grow up just a little bit more.

And oh God, if we do, I hope she’ll be okay.

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by Robert Rummel-Hudson

A Time Travel Fantasy

July 30, 2012 in Featured, Featured Member by Robert Rummel-Hudson

“How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?” ― Dr. Seuss

This past weekend marked an anniversary that always passes uncelebrated and usually not even commented on out loud, but which never goes by without a great deal of internal musing.

Nine years ago, Schuyler was diagnosed with bilateral perisylvian polymicrogyria. Nine years ago, the monster revealed itself and the future fell dark.

It fell dark mostly because our meeting with Schuyler’s pediatrician and her neurologist at the Yale School of Medicine was largely an exercise in Worst Case Scenarios. That’s not their fault. It’s what we as parents and patients ask for and even demand. “Give it to me straight,” say a thousand tv patients to a thousand tv doctors. We rarely see the followup, that moment of “Holy crap, I would very much like for you to go back and give it to me a little less straight if I could, please and thank you.”

But we think we want to hear the worst of what can happen to our kids, and as their protectors, it is right and proper that we do so. So we heard that Schuyler would probably never speak, that she would almost certainly have seizures which could debilitate or even kill her, she would probably have difficulty swallowing and might require a special diet best described as “everything goes in the blender, enjoy!”, and she would very likely have some level of what was still quaintly but not quite charmingly referred to as mental retardation. Schuyler would drool, she would seize, she would stumble, she would choke, and she would very likely have neither the language or the mental capability to express her frustrations with this life that our infinitely unlikely combination of insanely rare genes had given her.

Nine years later, I would very much like to have a vintage Delorean with a flux capacitor parked outside my apartment, one that I could drive to Connecticut and hit 87 mph right outside the Yale Med School. I would like to be able to go back and find that broken father, the one walking alone out into a perfect New England summer evening with tears in his eyes. I would like to pull him aside and tell him that the future isn’t even remotely as dark as he fears, that it will in fact be the finest decade of his life.

I would tell him how the doctors and the teachers and the therapists he’ll meet in the years ahead will be smart and dedicated individuals, and that they will help Schuyler immeasurably. But I would warn him that those professionals would also largely be as wrong as they could be. Schuyler will break through the wall of Very Bad Things they were building in his mind. She wouldn’t even know she was doing it.

I would tell that father how Schuyler will have a developmental disability but it won’t be extreme, and it won’t keep her from developing into a vibrant, funny and clever little girl. I would tell him that seizures will be late to arrive and will do so on gentle paws, not the grand mal monster feet he’s imagining. Schuyler will eat regular food, I’d say, although she will do so like Jabba the Hutt and somehow remain rail thin, so budget accordingly. She’ll drool a little, but she’ll adopt funky skater wrist bands to address the problem while at the same time starting a little mini-trend both online and in her real world. And her speech will be largely unintelligible to most people, but it will vastly improve, thanks in large part to astonishing speech technology about which he doesn’t have even the slightest awareness yet.

I would tell this younger and sadder me that things for Schuyler won’t be easy, but they won’t be as hard as he fears. And I would tell him that the adventure he was embarking on with his broken yet perfect daughter would define and enrich him in ways he couldn’t even begin to imagine. I would send him home to his family and let him begin the fated work of his young life, raising a strong and wise little girl while becoming perhaps just a little stronger and a tiny bit wiser himself.

And then I would get back in my Delorean and I would return to the present, where my weird and wonderful little monster slayer awaited me.

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by Robert Rummel-Hudson

The Grownups

July 2, 2012 in Community Wisdom, Featured by Robert Rummel-Hudson

I had the privilege of attending the 2012 AAC-RERC State of the Science Conference in Baltimore last week. It was eye-opening, mostly because with very few exceptions (like me, mostly), the folks in attendance were assistive technology professionals rather than consumers or parent advocates. It was a little like sneaking under the grownups’ table and listening in on the conversations.

That analogy feels especially appropriate, actually, in light of some of those conversations. As you might expect, there were a great many discussions concerning the use of the iPad and other consumer electronics products as assistive communication hardware in place of the older generation of expensive and frankly unwieldy dedicated speech devices. In a conference dedicated to the future of assisted communication, this was entirely appropriate. What was interesting to me, however, was how in the midst of a lot of new thinking, I heard frequent expression of some very old thinking, too.

Look. I get that this is a scary time for speech language professionals. The democratization of the AAC evaluation and decision-making process has thrown the industry in something of a tailspin. That process has, in the past, been largely driven by experts in the field. Funding and implementation decisions have always been in their hands, leaving parents and teachers and especially end users to trust and to hope that the recommendations that come from those experts will be accurate and appropriate. And I feel confident in assuming that in most cases, they are.

As we learned with Schuyler in 2005, however, in some cases, the experts get it very, very wrong. And when they do, those of us who must live with the results of their expert decisions don’t always have a great deal of recourse.

The revolution in consumer electronics choices is a game changer in that respect. To hear many speech language professionals, however, you could be forgiven for thinking that this democratization is a dangerous development. Over and over at the conference, I heard how parents were just running out and buying iPads, downloading the newest and shiniest AAC apps and then just expecting therapists to somehow “make it work” with their kids. Parents, that most ridiculous and pollyannish group in the process, we’re screwing it up for everyone by daring to make decisions for our kids, decisions that some of these experts believe are ill-informed. We’re like children ourselves, suddenly freed from the restrictions wisely placed on us by grownups. I actually heard one speech language professional invoke Lord of the Flies. I’m not even kidding.

And here’s the thing. I’m sure that happens, and not infrequently. But in the same way that it would be unfair for me to assume that because one assistive technology expert failed Schuyler so miserably at a pivotal time in her development, therefore they are useless as a profession, I think it’s a mistake to dismiss the work of parent advocates on behalf of their kids because you’ve dealt with some whose desperation and lack of information has led them down paths that aren’t productive. It would be a worst mistake to convince yourself that because of this, new and accessible technologies are a dead end for the future of assistive technology.

I’ve said it before, but it bears repeating. Teachers and therapists should think of parents as the most valuable members of their team, now more than ever. Not just because we will never stop fighting for our kids, and not because we will prove to be the quickest of studies when it comes to learning about what our kids need, and not even because we have the ultimate incentive to get it right in a way that surpasses even the most dedicated speech language professional. Professionals would be well advised to welcome parents and end users into the process as equal partners because the world has changed, and we are making final choices now. How you as professionals feel about that is frankly becoming irrelevant. Adapt or perish. And teach us to make the best decisions we can, starting off by educating yourselves as to what those choices now include.

I will say that one of the most interesting objections to the current direction of AAC in regards to the iPad was one that I hadn’t thought about before, and which on reflection feels entirely valid. At one of the groups discussions I participated in, a participant said she found the current crop of AAC apps to be completely disappointing, primarily because they represented old thinking. Every single of of them, particularly the ones that have established themselves at the top of the field, have simply striven to replicate the experience of using a standard speech device on the iPad. She maintained that perhaps it’s not just the physical hardware that needs to be rethought, but rather the entire experience. A new approach to how that assisted speech might work, and a newer, deeper integration with social media.

The iPad and its competitors are cracking a door to the future of assisted communication. Perhaps it’s time for us to kick that door all the way open.

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by Robert Rummel-Hudson

A Day Without Lawyers

June 18, 2012 in Featured, Yes, I Am a Special Needs Parent… by Robert Rummel-Hudson

A few months ago, I wrote about the legal fight going on between the innovators of Speak for Yourself, a augmentative speech app for the iPad, and the Prentke Romich Company and Semantic (“The Iceman Cometh, with his Legal Team”). I quickly described the situation at the time like this:

Okay, let’s wander into the weeds for just a moment. Last year an AAC app called Speak for Yourself was released that got the attention of a lot of us because of its use of the LAMP (language acquisition motor planning) concept. This focuses on a core vocabulary using consistent motor patterns that do not change. It is the basis of successful language systems like MinSpeak, licensed by the intellectual property company Semantic Compaction Systems for use in devices produced by the Prentke Romich Company, under the brand name Unity. It is these two affiliated companies, Semantic Compaction and PRC, that are attempting to sue the aforementioned pants off the developers of Speak for Yourself.

Well, things have changed a bit. Despite the fact that the parties have yet to have their day in court, Apple has pulled Speak for Yourself from the iTunes App Store. (PRC released a statement that begins with “Last week Prentke Romich Company (PRC) learned that Apple removed a language assistance app from its iTunes® store pending the outcome of a patent infringement lawsuit filed against the company that developed the iPad® app…”, but a careful read of the legal documents shows that Apple made this move at their request. Weasel words. Gotta love ‘em.) If you don’t already have Speak for Yourself on your iPad, you are out of luck, at least for the time being. If you do, you won’t be able to receive updates or remote fixes, and when Apple upgrades the operating system for the iPad later this year, there’s no guarantee the app will still work at all.

This is obviously a concern for users who are using the iPad and Speak for Yourself as their primary mode of verbal communication. Including, as of this summer, my daughter Schuyler.

There has been a great deal written about this situation. If you’re interested, the first, best place to go is this blog post by Dana Nieder, “The Silencing of Maya”. Dana has been the go-to person on this story, and she’s compiled a comprehensive list of links to the story as well. If you want to know more about this, that’s where you should go.

Now for my take on this, for whatever it might be worth.

There has been a great deal of discussion as to the validity of PRC’s claims against Speak for Yourself, and in a sense, it makes sense for everyone, particularly PRC and Apple, to let a court of law settle those claims. In a very real sense, however, that outcome is ultimately of limited relevance. As things stand right now, everyone loses.

Speak for Yourself loses because their product and their company dies if no one can buy it. Their clients obviously lose a tool that works, and that is very much not a small thing. Apple probably doesn’t lose, to be honest. We tend to think of the iPad as a major component in the disability world, but it’s easy to forget that the opposite probably doesn’t hold true. Apple probably sells more iPads in countries that don’t even have electricity than they do to users with disabilities. Our poor opinion of their business practices isn’t keeping Apple executives up late at night.

But most of all, PRC loses. They can win this court case, they can squash Speak for Yourself and get everything they seek in this situation, but the fact remains that with every story that runs in Time and on CNN and the Huffington Post, they are introduced to thousands of people who know nothing about their good work or their mission statement or their hundreds of dedicated professional employees. No, PRC is being introduced to thousands of people who will now and forever more know them only as “the big corporation that screwed over that poor cute little disabled girl”. That’s the kind of thing that leaves a mark. We can (and will) continue to argue about how accurate that public perception may be, but it’s irrelevant.

It’s irrelevant, and I suspect PRC knows it. I think they might have painted themselves into a corner, trapped by their own poor PR decisions, and they don’t know how to get out of it.

There is a way out, for everyone. The parties involved can take a step back and consider how they might come together and join forces. Under the auspices of PRC and the community of Unity users, Speak for Yourself and its developers would discover a credibility and a world of users that they would be unlikely to achieve on their own. PRC would finally be able to repair some of the public relations damage they’ve sustained and would grow their family. They would solve the very real technical problems involved with breaking into the consumer electronics market without a great deal of development skill. That’s no small consideration for PRC; frankly, their early efforts with iPad app programming has bordered on embarrassing. On their own, I don’t think PRC could release a solid MinSpeak app any time soon even if they wanted to. And perhaps most of all, PRC would benefit from a kind of evolution of their language system. One of the things I’ve been hearing expressed quietly here and there, and it’s something I agree with, is that in its use of a single representative symbol configuration, Speak for Yourself probably represents an improvement on Unity. PRC has a chance to benefit here, if they can work out a collaboration or even a merger with Speak for Yourself.

Will this happen? Frankly, I doubt it. Speak for Yourself’s team seems committed to fighting this fight, and rightly so, and PRC is showing no sign of backing down. But if all the parties involved could just get together in the same room for a Day Without Lawyers, this whole horrible state of affairs might just have an ending that doesn’t leave anyone feeling taken advantage of. Kids like Maya and Schuyler least of all.

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Be sure to check out Quinnlin’s journey with special needs and a special friend at Build-A-Bear Workshop‘s blog!

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