Community of Souls
“I thought I was the only one.”It was a surprising thing to hear from Schuyler. It never occurred to me to think that she really believed she was all alone with her Polymicrogyria, and on an intellectual level, I know she understood that she wasn ’t literally the only person in the world with it. But it wasn’t hard to understand why she would feel that way, or why she now understood just how very untrue that feeling was.She quietly made that statement to me as we sat at the Polymicrogyria Family Conference in Denver last weekend, listening to the keynote address by Australian writer, speaker and life coach Natalie ...
Source: Schuyler's Monster: The Blog - July 18, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The Folly of Fortune-Telling
In the spring of 2005, Schuyler was evaluated by the diagnosticians and special education educators at her school in Manor, Texas, near Austin. They concluded that her fine motor issues would most likely preclude her ever being able to write by hand, and while the extent of her developmental disability was still undefined, it was unlikely that she would ever be able to read or write in any meaningful way.Additionally, they saw no indication that Schuyler would ever be able to utilize a high-end dynamic voice output device. Such a device was deemed “not educationally necessary”.In the summer of 2018, Schuyler and I will...
Source: Schuyler's Monster: The Blog - June 10, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
No More Hiding
Schuyler ’s time in high school is quickly drawing to a close, faster than either of us are emotionally prepared for. As part of that transition, her percussion studio at Plano Senior had their end-of-the-year pool party yesterday, an annual event that concludes with awards, remembrances of the graduating seniors by her percussion director and a round-the-room sharing and appreciation by all the students in the class.The final award given is a kind of spirit award, but more than that. It ’s named after a former student, one who brought so much enthusiasm and positivity to the band and had such a deep effect on the peop...
Source: Schuyler's Monster: The Blog - May 21, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The Care and Feeding of Monsters
I recently had the surreal but entirely positive experience of revisiting my book on the occasion of its release, ten years after publication, in audiobook form. I began listening as a kind of quality check, bracing myself for the voice actor to introduce “Shooler’s Monster”. (He didn’t; he was actually a fantastic actor, and I couldn’t be more pleased that he was the one who got to spend nine hours in a recording booth instead of me. You were all spared my stuttering, monotone twang. You’re welcome.) I began listening to the first chapte r, and then, like a drunk who blacks out and then wakes up the next day p...
Source: Schuyler's Monster: The Blog - May 6, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Schuyler's Australian Adventure
Click here to donate to Schuyler ' s Australia fundSchuyler Hudson is a remarkable young woman with a brain malformation that changes how she experiences the world but does not stop her from living a rewarding and meaningful life. Since the age of five, Schuyler has used assistive speech technology to help her communicate with and experience the world around her. Now eighteen, Schuyler is preparing to graduate from high school and begin her adult life, using AAC technology to help her find her own way even with her profound differences.This summer, Schuyler has the opportunity to participate in a leadership workshop with a...
Source: Schuyler's Monster: The Blog - April 11, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The Big Fall
I ’ve always known that this fall, and I mean specifically the autumn of 2017, was going to be a big deal. The numbers line up in an interesting way. If you’re a young person and you’re having a child at the age of thirty-two, do the math. It means you’ll turn fifty the same year your kid turn s eighteen.Which is what ’s about to happen here.It ’s funny how you can look forward to, or perhaps dread, a coming change and still be at least mildly surprised at how it manifests itself. I guess that’s been a constant in raising Schuyler, and I suppose in parenting any kid with a significant difference. The only thi...
Source: Schuyler's Monster: The Blog - October 28, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
So it goes.
I haven ' t written much about Las Vegas. Part of the reason is that it turns out Schuyler and I have a random weird association with the event. Nothing exceptionally personal, but one of those “goose walked over my grave” kinds of things.Almost eight years ago, two of our dearest friends got married in Vegas, and since it was on Schuyler ’s tenth birthday and they adore their goddaughter, they turned their reception into a birthday party for her as well, with a beautiful cake and some of the people she loves most. The photos I took of Schuyler that evening are among my favorites ever, as are the memories we made tha...
Source: Schuyler's Monster: The Blog - October 3, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Lulu
Today we said goodbye to a member of our family. Today, we lost sweet, sweet Lulu.She joined our little family fourteen years ago, at a difficult time for us. In the fateful summer of 2003, in the quest to discover the reason for her wordlessness, Schuyler underwent a very traumatic MRI, one where she had to be anesthetized through an IV in the back of her hand. It was awful, and it left us all feeling exhausted and emotionally drained. “You know what?” I said a day or two later. “We’re going to get a motherf.ing puppy!”And that ’s how Lulu came to join us.She was the smallest in her litter, the only black pug ...
Source: Schuyler's Monster: The Blog - July 28, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Season of Change
This week atSupport for Special Needs:Excerpt: This will be Schuyler ’s senior year in high school, so everything she does will be one in a series of “the last time I’ll get to do this” experiences. For Schuyler and kids like her, much more than for their neurotypical classmates, this is daunting. Schuyler’s future remains clear and imaginable, if not entir ely predictable, for maybe ten months. After that, it’s a wall of creeping mist. Does it conceal rich and meaningful adult experiences, or is it a Stephen King kind of mist full of fear and danger and face-eating monsters? Your guess is as good as mine....
Source: Schuyler's Monster: The Blog - July 27, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Warriors
Today atSupport for Special Needs:Excerpt: Social justice warrior. SJW, to use the not-quite-clever abbreviation. Why would that ever be an insult with any real bite? To those who use that term in a derogatory way, I suspect it sounds funny because they ’ve never lived a life where societal injustice has ever left a mark on them or anyone they particularly care about. Do you occupy a world of privilege without ever actually looking outward with empathy or compassion? Then I suppose the idea of people who fight for the dignity and equity of vulner able populations might seem silly to you. I’ll give you that. (Sourc...
Source: Schuyler's Monster: The Blog - July 17, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
The Monster We All Feed
Today atSupport for Special Needs:Excerpt: We live in a society where rape culture isn ’t just a thing, but a gigantic thing. It’s a monster that we feed constantly, with our popular media and our societal privilege and an institutionalized misogyny that permeates our judicial systems and is now entrenched and protected at the highest levels of the executive. I wish I’d done mor e in the course of my life to fight that culture of rape and misogyny. I wish my commitment to fighting it had begun in my heart because I’m a human being and not because I’m the father of a daughter. Like the roots of my disab...
Source: Schuyler's Monster: The Blog - June 28, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Father ’s Day snapshot
Today atSupport for Special Needs:Excerpt: When Schuyler and I walk together, she ’ll still take my hand or lean against me. She’s more affectionate now than I probably have any right to expect. I always tell myself “You’d better enjoy this; one day she’ll be too embarrassed to show you much affection in public.” But I don’t know. She’s seventeen now, and while sh e’s still changing and learning so much as she rockets towards her future after high school, it’s starting to feel like we know the person she’s going to be. Looking at Schuyler now is to see the young woman she’s going to be, and pro...
Source: Schuyler's Monster: The Blog - June 16, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Productive
This week atSupport for Special Needs:Excerpt: So many changes. So much uncertainty. The universe just strapped a rocket pack to Schuyler ’s back. We shall see what this phase of her life ultimately looks like, and how well she’ll do as she steps out into a world of superficial but pervasive human valuation. It’s a lot to take in, and I am perhaps more worried about her than I’ve been at any time since her diagnosis fourteen y ears ago. But even with all her anxiety and also my own, I have to say it. I like her chances. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - May 31, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
Another Coda
Today atSupport for Special Needs:Excerpt: Her ultimate survival of her junior year is in large part due to the people who watch out for her, quietly and without drama, and who make it a little easier to put her on that bus in the morning and send her once more unto the breach, dear friends. Schuyler ’s true friends have turned out to be the ones we didn’t see coming. There are the band directors who have watched out for her and striven to understand what makes her tick and to build a safe but unrestrictive space around her. There’s the assistant principal who has taken exactly ZERO of her nonsense but who has b...
Source: Schuyler's Monster: The Blog - May 26, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
I see you. I see what you ’re doing.
Today atSupport for Special Needs:Excerpt: We push back against ableist speech, over and over again, because we hope, against all the evidence to the contrary, that things might get better. And they did just a little, for a while, I think. And then a candidate for the presidency made fun of a reporter with a disability, and the citizens of this country saw the video of his grotesque behavior and decided that yeah, that ’s our guy. And while that at least gave us a platform for advocating for disability rights, particularly at the Democratic National Convention, it also gave people license to say and do terrible thin...
Source: Schuyler's Monster: The Blog - May 18, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs
